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Doctors try CRISPR gene editing for cancer, a 1st in the US

Source: AP News
Date: 11/6/19
Author: Marilynn Marchione

The first attempt in the United States to use a gene editing tool called CRISPR against cancer seems safe in the three patients who have had it so far, but it’s too soon to know if it will improve survival, doctors reported Wednesday.

The doctors were able to take immune system cells from the patients’ blood and alter them genetically to help them recognize and fight cancer, with minimal and manageable side effects.

The treatment deletes three genes that might have been hindering these cells’ ability to attack the disease, and adds a new, fourth feature to help them do the job.

“It’s the most complicated genetic, cellular engineering that’s been attempted so far,” said the study leader, Dr. Edward Stadtmauer of the University of Pennsylvania in Philadelphia. “This is proof that we can safely do gene editing of these cells.”

After two to three months, one patient’s cancer continued to worsen and another was stable. The third patient was treated too recently to know how she’ll fare. The plan is to treat 15 more patients and assess safety and how well it works.

“It’s very early, but I’m incredibly encouraged by this,” said one independent expert, Dr. Aaron Gerds, a Cleveland Clinic cancer specialist.

Other cell therapies for some blood cancers “have been a huge hit, taking diseases that are uncurable and curing them,” and the gene editing may give a way to improve on those, he said.

Gene editing is a way to permanently change DNA to attack the root causes of a disease. CRISPR is a tool to cut DNA at a specific spot. It’s long been used in the lab and is being tried for other diseases.

This study is not aimed at changing DNA within a person’s body. Instead it seeks to remove, alter and give back to the patient cells that are super-powered to fight their cancer — a form of immunotherapy.

Chinese scientists reportedly have tried this for cancer patients, but this is the first such study outside that country. It’s so novel that it took more than two years to get approval from U.S. government regulators to try it.

The early results were released by the American Society of Hematology; details will be given at its annual conference in December.

The study is sponsored by the University of Pennsylvania, the Parker Institute for Cancer Immunotherapy in San Francisco, and a biotech company, Tmunity Therapeutics. Several study leaders and the university have a financial stake in the company and may benefit from patents and licenses on the technology.

Two of the patients have multiple myeloma, a blood cancer, and the third has a sarcoma, cancer that forms in connective or soft tissue. All had failed multiple standard treatments and were out of good options.

Their blood was filtered to remove immune system soldiers called T cells, which were modified in the lab and then returned to the patients through an IV. It’s intended as a one-time treatment. The cells should multiply into an army within the body and act as a living drug.

So far, the cells have survived and have been multiplying as intended, Stadtmauer said.

“This is a brand new therapy” so not it’s not clear how soon any anti-cancer effects will be seen. Following these patients longer, and testing more of them, will tell, he said.

November, 2019|Oral Cancer News|

Prevalence of Oral HPV Infection Declines in Unvaccinated Individuals

Source: Infectious Disease Advisor
Date: September 30th, 2019
Author: Zahra Masoud

Oral human papillomavirus (HPV) prevalence has decreased in unvaccinated men, possibly as a result of herd protection, but the incidence of such infection has remained unchanged in unvaccinated women from 2009 to 2016 in the United States, according to a study published in the Journal of the American Medical Association.

Since 2011 for women and 2006 for men, prophylactic HPV vaccination for prevention of anogenital HPV infection has been recommended for routine use in the United States. Previous studies have demonstrated that this vaccine has high efficacy in reducing the prevalence of oral HPV infection. However, the vaccine is not indicated to prevent oral HPV infection or oropharyngeal cancers because there are few results from randomized trials. Further, there has been a lack of surveillance studies reporting on herd protection against oral HPV infection, which is defined as a form of indirect protection from infectious diseases that occurs when a large percentage of the population has become immune/vaccinated, thereby providing protection for individuals who are not immune/not vaccinated. Therefore, this study investigated evidence for herd protection against oral HPV infection in unvaccinated men and women in the United States using temporal comparisons of oral HPV prevalence for 4 vaccine types and 33 non-vaccine types.

This study was conducted across 4 cycles (from 2009 to 2016) of the National Health and Nutrition Examination Survey (NHANES), using a cross-sectional, stratified, multistage probability sample of the civilian population in the United States. For the examination component, response rates were 68.5% in the 2009 to 2010 period, 69.5% in the 2011 to 2012 period, 68.5% in 2013 to 2014, and 58.7% in 2015 to 2016. In total, 13,676 participants were included, which represented 174,333,042 individuals in the US population aged 18 to 59 years. The 4 vaccine-type oral HPV were HPV-16, -18, -6, and -11. DNA was collected from oral rinses and was evaluated using PGMY09/11 polymerase chain reaction and linear array genotyping for 37 types of HPV presence. In unvaccinated individuals, sex-stratified analyses were performed along with multivariable logistic regression analyses adjusted for other variables.

From 2009 to 2016, HPV vaccination rates increased from 0% to 5.8% in men and from 7.3% to 15.1% in women. From 2009 to 2010 to 2015 to 2016, vaccine-type oral HPV prevalence declined from 2.7% to 1.6% (P =.009) in unvaccinated men; however, this decline was not heterogenous by age (P =.41 for interaction). During this period, non-vaccine-type oral HPV prevalence remained unchanged (P =.66) among unvaccinated men. From 2009 to 2010 to 2015 to 2016 in unvaccinated women, both vaccine-type and non-vaccine-type oral HPV prevalence remained unchanged (P =.79 and P =.58, respectively).

The 37% decline in vaccine-type oral HPV among unvaccinated men from 2009 to 2016 suggests herd protection against oral HPV infections. This herd protection may arise from the increased rate of HPV vaccination among women and is consistent with herd protection studies against genital HPV infections in unvaccinated women in the United States. The unchanged prevalence of oral HPV among unvaccinated women from 2009 to 2016 does not suggest herd protection; this may reflect low statistical power because of a low prevalence in women.

Overall, the study authors concluded that, “The estimated herd protection should be incorporated into evaluations of cost-effectiveness of HPV vaccination of men older than 26 years. Vaccine trials of oral HPV incidence and persistence in men should inflate sample sizes to account for herd protection.”

Reference

Chaturvedi AK, Graubard BI, Broutian T, Xiao W, Pickard RK, Kahle L, Gillison ML. Prevalence of oral HPV infection in unvaccinated men and women in the United States, 2009-2016. JAMA. 2019;322(10):977-979.

October, 2019|OCF In The News|

How Anti-Vaccine Sentiment Took Hold in the United States

Source: The New York Times
Date: September 23, 2019
Author: Jan Hoffman

As families face back-to-school medical requirements this month, the country feels the impact of a vaccine resistance movement decades in the making.

 

The question is often whispered, the questioners sheepish. But increasingly, parents at the Central Park playground where Dr. Elizabeth A. Comen takes her young children have been asking her: “Do you vaccinate your kids?”

Dr. Comen, an oncologist who has treated patients for cancers related to the human papillomavirus that a vaccine can now prevent, replies emphatically: Absolutely.

She never imagined she would be getting such queries. Yet these playground exchanges are reflective of the national conversation at the end of the second decade of the 21st century — a time of stunning scientific and medical advances but also a time when the United States may, next month, lose its World Health Organization designation as a country that has eliminated measles, because of outbreaks this year. The W.H.O. has listed vaccine hesitancy as one of the top threats to global health.

As millions of families face back-to-school medical requirements and forms this month, the contentiousness surrounding vaccines is heating up again, with possibly even more fervor.

Though the situation may seem improbable to some, anti-vaccine sentiment has been building for decades, a byproduct of an internet humming with rumor and misinformation; the backlash against Big Pharma; an infatuation with celebrities that gives special credence to the anti-immunization statements from actors like Jenny McCarthy, Jim Carrey and Alicia Silverstone, the rapper Kevin Gates and Robert F. Kennedy Jr. And now, the Trump administration’s anti-science rhetoric.

“Science has become just another voice in the room,” said Dr. Paul A. Offit, an infectious disease expert at Children’s Hospital of Philadelphia. “It has lost its platform. Now, you simply declare your own truth.”

The constituents who make up the so-called vaccine resistant come from disparate groups, and include anti-government libertarians, apostles of the all-natural and parents who believe that doctors should not dictate medical decisions about children. Labeling resisters with one dismissive stereotype would be wrongheaded.

“To just say that these parents are ignorant or selfish is an easy trope,” said Jennifer Reich, a sociologist at the University of Colorado Denver, who studies vaccine-resistant families.

It remains true that the overwhelming majority of American parents have their children vaccinated. Parent-driven groups like Voices for Vaccines, formed to counter anti-vaccination sentiment, have proliferated. Five states have eliminated exemptions for religious and philosophical reasons, permitting only medical opt-outs.

But there are ominous trends. For highly contagious diseases like measles, the vaccine rate to achieve herd immunity — the term that describes the optimum rate for protecting an entire population — is typically thought to be 95 percent. The Centers for Disease Control and Prevention found that the vaccination rate for the measles, mumps and rubella (M.M.R.) injection in kindergartners in the 2017-2018 school year had slipped nationally to 94.3 percent, the third year in a row it dropped.

Seven states reported rates for the M.M.R. vaccine that were far lower for kindergartners, including Kansas at 89.1 percent; New Hampshire, 92.4 percent; the District of Columbia, 81.3 percent. (The highest is West Virginia at 98.4 percent.)

Almost all states have at least one anti-vaccine group. At least four have registered political action committees, supporting candidates who favor less restrictive vaccine exemption policies.

Public health experts say that patients and many doctors may not appreciate the severity of diseases that immunizations have thwarted, like polio, which can affect the spinal cord and brain — because they probably have not seen cases.

“Vaccines are a victim of their own success,” said Dr. Offit, a co-inventor of a vaccine for rotavirus, which can cause severe diarrhea in young children. “We have largely eliminated the memory of many diseases.”

The growth of vaccine doubt in America coincides with several competing forces and attitudes.

Since the early 2000s, as the number of required childhood vaccines was increasing, a generation of parents was becoming hypervigilant about their children and, through social media, patting each other on the backs for doing so. In their view, parents who permitted vaccination were gullible toadies of status quo medicine.

In 2011, Dana Fuqua, of Aurora, Colo., pregnant with her first child, felt that irresistible pull of groupthink parenting.

She had just moved to the area, so she reached out to mothers’ groups on Facebook. Colorado, with a kindergarten vaccination compliance rate of 88.7 percent, has a rambunctious vaccine-resistant movement. Ms. Fuqua’s new friends urged her to have a drug-free birth, use cloth diapers and never to let a drop of formula pass her baby’s lips. Vaccines, it followed, were anathema.

The women intimidated her. They had advanced degrees; she had only a bachelor of science and a nursing background.

“I didn’t argue with them,” Ms. Fuqua said. “I was so desperate for their support that I compromised by delaying the vaccine schedule, so I wouldn’t get kicked out of the group.”

But when her second child was born prematurely, susceptible to illness, the group’s approval was not as important as her baby’s safety. Her position, she said, shifted from, “‘I can’t hang out with you if you had a vaccine because you could be shedding a virus’” — a common, false belief among the vaccine resistant — to, “ ‘If you haven’t had a vaccine, I will not associate with you.’”

She had both children fully vaccinated.

There have been anti-vaccination movements at least since 1796, when Edward Jenner invented the smallpox vaccine. But many experts say that the current one can be traced to 1982, when NBC aired a documentary, “DPT: Vaccine Roulette,” that took up a controversy percolating in England: a purported tie between the vaccine for pertussis — a potentially fatal disease that can cause lung problems — and seizures in young children.

Doctors sharply criticized the show as dangerously inaccurate. But fear spread. Anti-vaccination groups formed. Many companies stopped making vaccines, which were considered loss-leaders and not worth the corporate headache.

Then, in 1998, Andrew Wakefield, a British gastroenterologist, published a Lancet study (since discredited and withdrawn), associating the M.M.R. vaccine with autism.

Faced with risking autism or measles, some parents thought the answer was obvious. Most had never seen measles, mumps or rubella because vaccines had nearly eliminated them. But they believed they knew autism.

And most people are notoriously poor at assessing risk, say experts in medical decision-making.

Many stumble on omission bias: “We would rather not do something and have something bad happen, than do something and have something bad happen,” explained Alison M. Buttenheim, an associate professor of nursing and health policy at the University of Pennsylvania School of Nursing.

People are flummoxed by numerical risk. “We pay more attention to numerators, such as ‘16 adverse events,’ than we do to denominators, such as ‘per million vaccine doses,’ ” Dr. Buttenheim said.

A concept called “ambiguity aversion” is also involved, she added. “Parents would like to be told that vaccines are 100 percent safe,” she said. “But that’s not a standard we hold any medical treatment to.”

Relatively few people are absolutists about refusing all vaccines. “But if you’re uncertain about a decision, you’ll find those who confirm your bias and cement what you think,” said Rupali J. Limaye, a social scientist who studies vaccine behaviors at the Johns Hopkins Bloomberg School of Public Health.

Nowhere is that reinforcement more clamorous than on social media, Dr. Limaye added. “You may only see your pediatrician a few times a year but you can spend all day on the internet,” she said.

People tend to believe an individual’s anecdotal narrative over abstract numbers. By 2007, when Ms. McCarthy, the actress, insisted that vaccines caused her son’s autism, thousands found her to be more persuasive than data showing otherwise. A nascent movement took hold.

At the same time that these powerful attacks on vaccine confidence were underway, a constellation of trends was emerging.

The definition of a good parent was becoming fraught with the responsibility for overseeing every aspect of a child’s life.

“As we adopted a culture of individualistic parenting, public health became a hard sell,” Dr. Reich said.

The primary reason for healthy people to get the flu shot is to protect those with compromised immune systems, like infants and older adults, from getting sick. But altruism isn’t a great motivator for parents, Dr. Buttenheim said. “They are much more concerned about protecting their own child at all costs,” she said.

Contrast that attitude with the collective good will of the 1950s, say medical sociologists, when American parents who had seen President Franklin Delano Roosevelt’s wheelchair as a debilitating symbol of polio patriotically sought to vaccinate their children to help eradicate the disease worldwide.

By 2014, studies showed that parental confidence in authorities like the C.D.C. and in pediatricians was dropping, especially around vaccines. Mistrust of Big Pharma was even more pronounced.

By then, Donald Trump was offering support on Twitter for the discredited link between autism and vaccination. As president-elect, he met with leaders of the anti-vaccination movement, although as measles cases surged, he endorsed vaccination.

As parenting became rife with orthodoxy, the Marcus Welby model of the paternalistic doctor retreated. Patients asserted autonomy, brandishing internet printouts at doctors. Shared decision-making became the model of doctor-patient engagement.

Pediatricians offered to stagger vaccine schedules. Some were even flexible about vaccinations altogether.

In 2011, shortly after Emma Wagner had given birth in Savannah, Ga., a pediatrician on the ward examined the baby. “He asked me if I was interested in the hepatitis B vaccine,” she said of an inoculation typically done at birth.

She was apprehensive.

He replied, “‘That’s fine, because your 2-day-old daughter isn’t a prostitute and isn’t using I.V. drugs, so hep B isn’t at the top of my worries.’”

Ms. Wagner said she “swallowed the anti-vax Kool-Aid. I was motivated by fear. I thought, ‘Until I know for certain that these are safe, I won’t do it.’ The pediatrician said, ‘I will support your decision and in a few years we’ll talk about exemptions for school.’”

She has since become a staunch supporter of immunization.

Libertarianism also courses through vaccine hesitation, with parents who assert that government should not be able to tell them what to put in their bodies — a position often marketed as “the right to choose.”

“Having the government order them to do something reinforces conspiracy theories,” said Daniel Salmon, director of the Institute for Vaccine Safety at Johns Hopkins. “And people perceive their risk to be higher when it’s not voluntary.”

In reality, he said, one’s risk of harm is greater while driving to an airport than it is being on the airplane itself. But driving is voluntary and gives the illusion of control. People fear flying because they cannot control the plane. By extension, many childhood vaccines are not voluntary, which rattles those who prefer to believe they can control their health.

With so many different but deeply held convictions, public health experts struggle to design vaccine-positive campaigns.

In 2017, researchers applied the six values of “the moral foundations theory” to vaccine attitudes, surveying 1,007 American parents.

The results were intriguing. Those most resistant to vaccines scored highest in two values: purity (“my body is a temple”) and liberty (“I want to make my child’s health care decisions”).

A third, said Saad B. Omer, director of Yale’s Global Health Institute and an author of the study, was also telling: deference to authority — a score indicating whether one was likely to adhere to the advice of experts like a pediatrician or the C.D.C.

Dr. Salmon’s team at Johns Hopkins is working on an app to capture parents’ vaccine attitudes and to tailor information to persuade them to vaccinate their children.

Pediatricians are front-line persuaders, he said, and they should be compensated for the time it takes to educate parents.

Most experts note that physicians themselves, never mind parents, have no idea about the federal vaccine monitoring systems, which have been in place for more than 20 years.

“We ask parents in the first two years of their child’s life to protect them against 14 diseases, that most people don’t see, using fluids they don’t understand,” Dr. Offit said. “It’s time for us to stand back and explain ourselves better.”

September, 2019|Oral Cancer News|

Cases of Vaping-Related Lung Illness Surge, Health Officials Say

Source: New York Times
Date: 09/06/19
Author: Matt Ritchel & Denise Grady

Indiana announced a third death linked to the illness on Friday, and Minnesota a fourth. State and federal health officials are working urgently to understand the causes.

Medical experts and federal health officials on Friday warned the public about the dangers of vaping and discouraged using the devices as the number of people with a severe lung illness linked to vaping has more than doubled to 450 possible cases in 33 states. The number of deaths linked to vaping rose to four from two on Friday.

The Indiana Department of Health announced the third death, saying only that the victim was older than 18. Hours later, officials in Minnesota confirmed that a fourth person had died. The patient, who was 65, had a history of lung disease, but state officials said his acute lung injury was linked to “vaping illicit T.H.C. products.”

The Los Angeles County Department of Public Health was investigating a possible fifth death, saying on Friday afternoon that the fatality was “associated with the use of e-cigarettes, also known as vaping.”

“There is clearly an epidemic that begs for an urgent response,” Dr. David C. Christiani of the Harvard T.H. Chan School of Public Health wrote in an editorial published on Friday in The New England Journal of Medicine.

The editorial called on doctors to discourage their patients from using e-cigarettes and for a broader effort to increase public awareness about “the harmful effects of vaping.”

Officials from the Centers for Disease Control and Prevention echoed that call in a briefing.

“While this investigation is ongoing, people should consider not using e-cigarette products,” said Dr. Dana Meaney-Delman, who is leading the C.D.C.’s investigation into the illness.

C.D.C. officials said they believe that some “chemical” is involved as the cause but they have not identified a single responsible “device, product or substance,” Dr. Meaney-Delman said.

Dr. Christiani wrote in The New England Journal editorial that it was not yet clear which substances were causing the damage. E-cigarette fluids alone contain “at least six groups of potentially toxic compounds,” he wrote, but he noted that many of the patients had also vaped substances extracted from marijuana or hemp. The mixed-up stew of chemicals might even create new toxins, Dr. Christiani suggested. The journal also published a study of two clusters of 53 cases in Wisconsin and Illinois.

What looked like scattered cases earlier this summer has become a full-fledged and widespread public health scare, leaving otherwise healthy teenagers and young adults severely ill.

The first case of the mysterious lung illness, in Illinois, came in April, indicating that the syndrome emerged earlier than the mid-June date that federal officials have often cited as the time the afflictions began.

The patients studied in Illinois and Wisconsin were typically “healthy, young, with a median age of 19 years and a majority have been men,” said Dr. Jennifer Layden, chief medical officer and state epidemiologist for the Illinois Department of Public Health. A third were younger than 18.

The journal article about the Illinois and Wisconsin patients said that 98 percent were hospitalized, half required admission to the intensive care unit, and a third had so much trouble breathing that they needed to be placed on ventilators.

Eighty-four percent had vaped a product including T.H.C., the high-inducing chemical in marijuana. Dr. Layden said a majority had also used a “nicotine-based product,” noting that there were “a range of products and devices.”

The journal article about those cases mentions that the heating coils in vaping devices might release metal particles that could be inhaled.

“The focus of our investigation is narrowing but is still faced with complex questions,” said Ileana Arias, the C.D.C.’s acting deputy director for noninfectious diseases. She added, “We are working tirelessly and relentlessly.”

Mitch Zeller, the director of the Center for Tobacco Products at the Food and Drug Administration, said particular concern is developing around products that are jury-rigged by vaping retailers, or tampered with or mixed by consumers themselves. “Think twice,” he said, urging consumers to avoid vaping products purchased on the street or that they have made themselves.

Public health officials have underscored one fundamental point: that the surge in illnesses is a new phenomenon and not merely a recognition of a syndrome that may have been developing for years.

Indiana on Friday confirmed a third death from a severe lung illness linked to vaping shortly before officials in Minnesota confirmed a fourth. Two other people — one in Illinois, the other in Oregon, both of whom were adults — have died from what appears to be the same type of illness, health officials in those states have said.

Patients afflicted with the illness typically have showed up in emergency rooms with shortness of breath after several days of flulike symptoms, including high fever.

In an especially severe case in Utah, a 21-year-old man had such serious lung damage that even a ventilator could not provide enough breathing help. Doctors had to connect him to a machine that pumped oxygen directly into his bloodstream to keep him alive.

Fluid from his lungs contained white blood cells full of fat, not from the substances he had vaped, but more likely a sort of debris from the breakdown of his lung tissue.

“We were flying in the dark with this kid,” said Dr. Sean J. Callahan, a pulmonologist and critical care specialist at the University of Utah, and an author of a letter about six vaping patients in Utah that was published Friday in The New England Journal of Medicine.

“I thought he was going to die,” Dr. Callahan said. “I kept thinking, his parents were there, if this were me and my wife, how crushed we would be for something that is completely avoidable. I worry that these products are really geared toward young people and kids, and we need a call to ban these things. That’s my call to action as a father and a doctor.”

The patient survived, and went home after two weeks in the hospital.

It is too soon to tell whether people with vaping injuries will recover fully, or sustain lasting lung damage, Dr. Callahan said.

He added that doctors need to take better histories of young patients who come in with pneumonialike symptoms to try to find the real cause. Some patients and their families are forthcoming about vaping, but others are not. In one case, he said, medical residents were puzzled by what could have caused the illness. He asked the patient’s mother to leave the room and then, instead of asking if the patient vaped, he simply asked, “What do you vape?” The answer was T.H.C.

The state of New York, where 34 people have become ill, said on Thursday that vaping samples from eight of its cases showed high levels of a compound called vitamin E acetate. Investigators there are focusing on the possibility that the oily substance might be playing a key role in the illness.

However, some of the more than 100 vaping samples being examined by the federal government did not test positive for vitamin E acetate, so that compound remains only one of many possible causes of the heavy lung inflammation.

September, 2019|Oral Cancer News|

cole Gibbs on the dental visit that led to a cancer diagnosis and how it reaffirmed her love for tennis

Source: ESPN
Date: August 1st, 2019
Author: Nicole Gibbs, as told to D’Arcy Maine

 

Nicole Gibbs is a 26-year-old professional tennis player, currently ranked No. 137 in the world and playing for the Orange County Breakers of World TeamTennis. The former NCAA singles and doubles champion was diagnosed with cancer in the spring after a routine dentist appointment. She shared her story with us amid her comeback to the court.

Shortly before Caroline Wozniacki’s bachelorette party festivities in April, I received a promotional email for a free teeth-whitening from my new dentist. “Oh, sweet!” I remember thinking. Naturally, I wanted to look good for the weekend (knowing how much of it was going to end up on Instagram and all), and for at least two years I was slacking on getting a regular cleaning.

So I went. And it changed everything.

It was my first time seeing this dentist, and he instantly noticed a small growth on the roof of my mouth. I mentioned this to my primary doctor at least five years ago; she told me it was nothing to worry about, a common bone growth that didn’t seem to be growing rapidly or doing anything of concern. My dentist at the time felt the same. It was about a centimeter in diameter and not causing me any pain or discomfort. However, my new dentist felt differently — the growth set off major alarm bells for him, and he encouraged me to get it biopsied. He felt certain it was not a bone growth.

I went to an oral surgeon the very next day. He thought it would be benign, based on its history, how long it had been in my mouth and how slowly it was growing. But the biopsied sample was sent to a pathology lab for an official diagnosis. I then, happy to at least not have that hanging over my head, went to the Bahamas to celebrate Wozniacki.

Shortly after getting back home, about a week after the initial dentist appointment, I got the call with the results.

It was cancer.

As soon as the doctor said the word, I glazed over. I didn’t hear much else, but I am pretty sure I cracked an awkward joke. It wasn’t until I called my fiancé, Jack Brody, that it really hit me. I started to fall apart and panic. It felt like my biggest fear come true. Since a very young age, I had been terrified about getting cancer. I almost started to question myself, like, had I manifested this with my anxiety about it? Did I bring this upon myself somehow by being so concerned about it?

Then my thoughts went to the tennis court. Would I ever be able to play again?

I made the mistake of going to WebMD and doing a Google search for oral cancer because I didn’t have any more specifics at that point, and the first thing that popped up was “17 percent five-year survival rate.” I thought, “Oh cool, I’m going to die.” It was terrifying, but I thankfully discovered soon after I had mucoepidermoid carcinoma, which is more of a subset and much less scary. I didn’t let myself play internet doctor after that and told Jack he was the only one allowed to Google anything from that point forward.

Everyone was hopeful we could treat the cancer with surgery alone, but radiation was also a possibility if the surgeons weren’t able to remove it all. While that is worrisome enough on its own, someone mentioned to me I could potentially lose all my teeth as a consequence of radiation. Leading up to the procedure, I kept thinking, “Please just be a surgery, please just be a surgery.” I didn’t want my teeth to fall out.

I had the surgery on May 17. The typical recovery period is four to six weeks, but my surgeon believed that, as a professional athlete, I could be on the low end of the timetable. My goal was to be back in time for Wimbledon qualifying, which started on June 24, and that felt possible.

However, there were a number of complications that made us throw that dream right out of the window, starting with the procedure being significantly more invasive than they initially planned. Too much of the tumor was taken out during the biopsy, and as a result, they didn’t have a clear idea of where it was. They needed to cut in further and wider to ensure they got it all out.

Not only that, but the prosthetic — really just a glorified retainer — I needed to wear on the roof of my mouth to protect it after the surgery didn’t fit properly. So they had to screw it in. Do you know what happens when you have a screwed-in retainer that doesn’t get to be taken out and cleaned? It causes an infection. So instead of the two days I had expected to stay in the hospital, I was there for seven long, agonizing days.

During my extended stay, I also got some unexpected news: Turns out I didn’t have mucoepidermoid carcinoma, but instead microcystic adnexal carcinoma. Don’t worry if you’ve never heard of it. My doctors told me they had only ever seen 12 recorded cases of it.

That’s right — 12. I was lucky No. 13.

While that didn’t change the treatment much, it did mean the cancer had a greater risk of being elsewhere in the body. It has the potential to travel aggressively along nerve pathways. When I asked what exactly that meant, my doctor said, “In layman’s terms, that means it can jump tissue.” How frightening is that? Thankfully, I already had a full-body PET (positron emission tomography) scan, and there were no signs of cancer anywhere else. But still, it was alarming. (I still haven’t quite determined if the rarity and odds of this type of cancer mean I should now engage in every risk-taking activity or become a bubble kid and never go outside, but I’ll let you know when I figure that out.)

We thought I would be on a feeding tube for two days, as I couldn’t ingest food orally, and then I would graduate to soft foods once I got home. However, one of the stitches in my mouth blew open (another fun setback!), and every time I would try to eat or drink, it would come out of my nose. Sure, it’s sort of a great party trick, but not really what I was going for. In the end, I had to go home with the feeding tube — and use it for 3½ weeks in total.

It was tough. I definitely gained a new appreciation for how brutal medical trauma can be. I found it really dehumanizing. It’s so challenging to have a tube hanging out of you and looking visibly ill. You can’t hide from it. And then losing the ability to socialize around food, which is so much of our lives. I didn’t want to go out to dinner while I had a feeding tube and couldn’t eat anything.

I made sure to get out of the house, just to get some sunshine, at least once a day. I took long walks and tried to find small things to do, to give me a little purpose. But it brought me to my breaking point on several occasions. I remember looking at Jack and saying, “I really can’t do this anymore.” But I quickly realized that I didn’t have a choice. I knew I just had to tough it out.

The worst moments were when I was getting off the pain medication after 2½ weeks of strong dosages. I don’t know the mechanics of it, but I ended up feeling very depressed once I stopped taking it for about 48 hours. It was right around the time I started to go back to the gym to slowly train. On the first morning off the medication, I said to my trainer, Daniel Ciccolini, “I just can’t do this today.” I don’t think I had said a word other than that or smiled at all, and I was just in the worst mood. I was incapable physically of much of anything, but he was so patient. He took me through all of these easy core and mobility exercises. Whatever we could accomplish that day, we did, even though it was such a brutal day.

Because I was able to accomplish something that day, anything really, it gave me hope. If I hadn’t had that, it would have been devastating.

And every day after that, I felt a little bit better and made a little bit more progress. I did more with my trainer and my incredible support system. I could feel myself gaining in physical strength, and I was like, “OK, I’m getting somewhere!”

I returned to competitive tennis in early July at a tournament in Hawaii. I went in with no expectations whatsoever. I still can’t even drink too much water during changeovers without it going out my nose. (The doctors are hoping the hole in my mouth will fully close up on its own in the next few months, but otherwise, I will need another surgery.) I surfed every day in Hawaii and even had a glass of wine with dinner some nights — things I would have never done while competing. I shocked even myself and ended up making it to the final.

I ended up losing in the championship match to Usue Maitane Arconada, but when I thought about where I had been less than two months before, I certainly felt like a winner.

Before this experience, I was constantly wondering, “Is tennis something that I really love? Would I miss it in my life if it was gone?” And I’m blessed in so many ways to have been forced into that answer. I wasn’t ready for tennis to be taken away from me.

It may sound weird, but I’m thankful that this happened for a number of reasons, one of which is because it reconfirmed my love of sports and tennis. It reminded me that I’m not done. It’s given me such a fresh perspective, and I’m grateful for that.

I’ve been playing for the Orange County Breakers for the World TeamTennis season. It’s been a little bit of a whirlwind — I went from playing in the final in Honolulu on Sunday to playing in our opener the very next day in Orlando — but it’s been great, and I’m making up for lost time in terms of getting match experience this summer. My teammates have been so sweet. Every time I say, “Guys, I’m so sorry, I’ve been playing terribly,” they’re like, “Remember where you were five weeks ago?” The support has been so incredible.

I’m still finalizing my upcoming schedule, but I’ll be playing in several tournaments over the next few weeks before going to New York for US Open qualifying in the middle of August. My newfound semi-relaxed attitude worked in Hawaii, so I’m going to try and maintain that going forward. I was so disciplined before. I would never have surfed during a tournament; I would have been concerned about getting hurt or being too tired. But ultimately, that’s just no way to live. And I would never tell my best friend to live their life that way, in fear of bad things happening or being so worried about results. Ironically, I think it’s going to free me up to play much better tennis. And if it does, it does. If it doesn’t, then I’m at least having fun and enjoying my life.

At the end of the day, I feel so lucky. Yes, I’m lucky because the cancer could have been so much worse, but really, I’m lucky because I think I needed this experience in my life. I am genuinely thankful that it happened.

I know that sounds nuts, but early on when we were getting the diagnosis, Jack said, “I think if this isn’t the worst thing that ever happens to us, it’ll be the best thing that ever happens to us.” And so far, that’s been really, really true.

I want to hold on to all of these lessons and remember that tennis is not everything. It’s a lot of fun, and it should be. But it’s put my life into a new sense of balance I didn’t have, and I think I’m going to be a much happier person for the rest of my life as a result if I can keep this perspective. You have to enjoy the time you have because you’re not guaranteed to always be here. I knew that in theory, but to actually feel like my life might be taken away, it was such a powerful reminder to enjoy every day and every moment.

Cancer was initially my nightmare, but it weirdly turned into a dream-come-true diagnosis because it made me confront so many things in my life. It was debilitating and scary at times, but look at me — I’m back up on my feet so soon after and appreciating every second. It’s a win in my book.

 

August, 2019|Oral Cancer News|

Precision Medicine Is Crushing Once-Untreatable Cancers

Source: Newsweek
Date: June 16th, 2019
Author: David H. freedman

 

For tens of thousands of patients, precision medicine is rewriting their cancer stories.

Linda Boyed, for example, an energetic 52-year-old occupational therapist, was thrilled to be on vacation with her family in Hawaii, hitting the beaches and taking long walks. But she couldn’t shake a constant feeling of fatigue. By the time she returned home, near Columbus, Ohio, her skin had yellowed. Her doctor passed her to an oncologist, who delivered the bad news: Cancer of the bile ducts in her liver had already spread too far for chemotherapy or surgery to do any good. He offered to help keep her comfortable for her final few months.

Boyed’s husband refused to accept that prognosis. He found a doctor at Ohio State’s cancer center who was running studies of experimental drugs for gastrointestinal cancers. Boyed signed herself up. Genetic tests on her tumors revealed a mutation in a gene called FGFR (short for “fibroblast growth factor receptor”), which was likely spurring the cancer’s growth. The doctor gave her an experimental drug, called BGJ398, to inhibit the action of the FGFR mutation. Boyed’s symptoms cleared up, the tumors stopped growing, and she regained the weight she had lost.

That was three years ago.

These days Boyed gets downright bubbly when she tells the story. “I basically lead a normal life now,” she says. “I just watched my son graduate from high school. I think I actually did more in the past year than I did before the cancer.”

Stories like Boyed’s are playing out across the U.S., as new cancer drugs emerge from labs and enter trials. The days when cancer patients received one-size-fits-all regimens of chemotherapy and radiation may soon be a thing of the past. Instead, doctors are taking a far more nuanced view of what drugs and treatments will work on which patients and on what different kinds of cancers. The idea of this so-called precision medicine, or personalized medicine, is that ultimately doctors will use genetic tests—of both the patient and the cancer tumor—to determine the exact drugs or treatments that have the best chance of working.

Although precision-medicine techniques are now being trained on many diseases, their impact is being felt most strongly in cancer treatment. Researchers are building a growing list of genes and genetic mutations that show up in tumors and matching them to drugs that can stop them. The cancer genes that drugs can target now number in the dozens, and researchers are hot on the trail of hundreds more. For some cancers once considered virtual death sentences, the outlook is already much improved: About half of lung-cancer patients respond well to one of the new gene-matched therapies, and in half of those cases, the cancer doesn’t come back. FGFR inhibitors, the drug that saved Boyed, have shown promise not only in bile duct cancer but also for some types of bladder, lung, breast and uterine cancers. “We have six trials open now for FGFR inhibitor drugs alone,” says Sameek Roychowdhury, the oncologist who saved Boyed’s life. “By the end of this year there should be 20.”

After decades of fits and starts in the field of cancer research, the progress made in precision medicine is welcome news indeed. But make no mistake: There is no “cure.” Medicine is not even close to bringing cancer to its knees. For patients diagnosed with advanced cancers—those that have already metastasized, or spread—only one in 10 turn out to have genes currently known to make the cancer susceptible to a new drug. “Our goal is to give 100 percent of patients a new therapy based on genomic testing,” says Roychowdhury. “But today we don’t know how to provide a special treatment for the results of nine of 10 genomic tests we do.”

Most patients don’t even get that one-in-ten chance. Many doctors still lack expertise in the area and fail to administer the genetic tests that could open the door to a precision medicine treatment. Expense is also an obstacle: Insurance companies don’t reimburse adequately for the tests. For these reasons, only 10 percent of cancer patients undergo genetic testing. Precision medicine is helping, at best, only a few percent of the nearly 2 million people who are diagnosed with cancer in the U.S. each year, and the fraction is much smaller among the 17 million cancer patients worldwide.

To increase the number of patients eligible for treatment, doctors are turning to artificial intelligence for help. Genetic testing is churning out so much data that even an army of Ph.Ds couldn’t make sense of it all. Artificial intelligence turns that volume of data from a liability to an advantage. Scientists are now delegating the task of finding the weaknesses in cancer tumors to “deep learning” software that can churn through millions of genetic test results and patient outcomes to find new relationships between tumor genes, cancer growth and specific drugs.

Teasing Out Patterns

To increase the odds that a cancer patient who walks through their doors is given a treatment option, City of Hope National Medical Center outside of Los Angeles plans within two years to be the first major hospital in the U.S. to do genomic testing on the tumors of every single one of its 9,000 cancer patients a year. “Tumors that look identical under the microscope look vastly different under from a genomic point of view,” says Michael Caligiuri, a physician and president of City of Hope National Medical Center outside of Los Angeles. “They need to be treated differently.”

As other hospitals follow suit, they will generate a vast volume of data—grist for the AI mill. The 20,000 genes of a typical human genome include three billion DNA nucleotides, or bits of information, any of which can be mutated, repeated or moved in any number of ways to cause cancer. Each of the human body’s billions of cells has its own copy of the genome, subject to its own mutations.

But DNA is only part of the picture: Whereas DNA is a blueprint, the real work in our cells is carried out by proteins—complex molecules that control almost everything in our biology. Proteins govern both the growth of a cancer tumor and the work of the immune system in fighting it. There are as many as 6 million basic proteins and variations on them, and researchers are now measuring thousands of them directly in cancer-tissue samples and feeding that information to the deep-learning programs.

“Drugs don’t target genes, they target proteins,” says David Spetzler, chief scientific officer of Caris Life Sciences in Irving, Texas. “That’s where we’re seeing the most progress in understanding cancer, and it’s what’s going to be the most useful information we gather in the next five years.” Says Jeffrey Balser, a physician who heads the Vanderbilt University Medical Center: “That’s a lot of incredibly deep knowledge coming to the table.”

Deep-learning algorithms don’t work the way scientists do—they never “understand” the biology behind the cancer they’re analyzing. Instead, they digest reams of information from tissue samples of patients that had certain kinds of cancer, and correlate that information with the ultimate fate of those patients—who responded to which treatments and who didn’t. It’s a kind of hit-or-miss association exercise, but one that’s conducted thousands of times, using vast amounts of data. Computers can tease out patterns in the data that a human could never see—linking, say, the presence of the FGFR gene to a particular cancer of the bile duct.

Spetzler’s company, for instance, is working to crunch protein-fortified data with deep-learning software. To wring useful insights out of the data from 170,000 cancer patients that Caris has access to, the company enlists hundreds of different deep-learning algorithms. The programs essentially compete with one another to find patterns in the data that indicate which drugs will work best with which patients. “Different algorithms will miss different patients, but together they can do a better job,” says Spetzler.

AI is helping provide yet another critical set of clues to how to match patients to new drugs by learning to read slides of tissue samples taken in biopsies. Those slides have always been read under a microscope by pathologists, who come up with a cancer diagnosis based on the cells’ appearance. So-called “machine learning” programs are starting to step in. An Israeli company called Nucleai has trained its software with 20 million digitized biopsy slides to recognize cancer, and it already performs with 97 percent accuracy.

Diagnosing cancer is just the start, says Nucleai CEO Avi Veidman. The goal now is to use AI to extract more information from slides than pathologists can—information that can help match patients to new drugs. “Most of the information in that tissue isn’t being used when doctors or software are trying to predict the treatments that will work,” says Veidman, who spent two decades with Israel’s intelligence forces developing AI software to recognize missile bases and terrorist activity in satellite images before turning his attention to cancer three years ago. “AI can analyze the different types of features in the image much more efficiently and find hidden patterns.” He notes, for example, that subtle signs of the battle between the patient’s cancer cells and immune-system cells can be spotted by the software, and those signs can provide essential clues to whether or not the cancer might be vulnerable to one of several new immunotherapy drugs—that is, drugs that work not by fighting the cancer directly, but by boosting a patient’s immune system so it can attack the tumor.

South-Korean firm Lunit has developed AI software that can analyze pathology slides to predict, for example, which patients will respond to a relatively new type of cancer drug called checkpoint inhibitors, which can prevent cancer cells from blocking a patient’s immune cells. Lunit claims that the software is 50 percent more accurate than tests that use genetic data alone. “That’s going way beyond what human eyes can do,” says CEO and physician Beomseok Brandon Suh. “The software is finding patterns that are too complex for people to recognize, but that have biological meaning.”

Similar advances are taking place with AI-based systems that are reading X-rays, MRIs and other image data. “There are already algorithms that are as good at reading a mammogram as a highly trained radiologist, or at recognizing skin cancer as a dermatologist,” says Chi Young Ok, a pathologist at the MD Anderson Cancer Center in Houston. “The progress is astounding.” Eventually those images, too, are likely to help AI systems go beyond diagnosing cancer to spotting hints of the vulnerability of a patient’s unique cancer.

Data Dilemma

Deep-learning algorithms look at more data and analyze it more thoroughly than machine learning programs do. They are a bit like Seymour, the ravenous plant in Little Shop of Horrors, whose appetite never stopped growing. Although researchers and clinicians now have access to databases that contain information from as many as 250,000 cancer patients, it’s not nearly enough.

Thousands of different mutations in a patient’s genome can shape the development of cancers and determine which treatments are effective. Each cancer cell is a moving target, continually developing new mutations that can help it evade immune cells and survive powerful cancer drugs. Since AI software needs thousands of examples of a particular pattern before it can begin to recognize it, and since a particular pattern of mutations may come up in only a few thousand patients altogether, the software may well need access to the data of millions of patients to make faster progress. “We can make predictions now about how tumors will evolve and what treatments will work, but right now a significant fraction of those predictions are wrong,” says UCLA’s Paul Boutros, a physician who heads up cancer data science for the UCLA Jonsson Comprehensive Cancer Center.

A number of collaborations—with names like the International Cancer Genome Consortium, the Oncology Research Information Exchange Network, and the Actionable Genome Consortium—have sprung up among research centers and hospitals to share patient data. Gathered with patients’ permission and with personally identifiable information stripped out, that data could eventually help researchers reach the needed critical mass of information. “We need to get to the point where all these different data networks are tied together into a network of networks,” says City of Hope’s Caligiuri. Clinicians need access to that data, too, to find patients like the ones they’re treating to see what might work. “We should be able to go to a computer, type in information about a patient’s cancer, and up will pop 50 cases around the world that are similar at the molecular level,” he says.

Easing the Bottleneck

Medicine is of no use if patients don’t have access to it. To get new drugs out faster, researchers are using AI to speed the process of drug development. One of the biggest causes of delay in testing new drugs is recruiting enough patients for a trial. Researchers not only need a group to try the new drug, but another “control” group to get the standard treatment, for purposes of comparison. Even when a new precision drug is promising, it can take years to run the trials that demonstrate the drug actually works for an identifiable group of patients.

To speed things along, researchers are starting to use high-powered statistics and computer models to avoid having to recruit a control group at all. Instead, they use a mashup of data from past studies to predict how a real control group would fare. “The results you get from a synthetic control arm are as reliable as if you had actually enrolled control-group patients in the trial with the same physicians and protocols,” says Glen de Vries, president of Medidata Solutions, which has designed the statistical tools.

That won’t be enough to ease the trial bottleneck for clinicians and researchers hoping to come up with precision treatments for the deadliest, most aggressive cancers. For instance, glioblastoma, the brain cancer, has the lowest median survival time from diagnosis—15 months—of any major cancer. It’s challenging enough to design a drug that can make it through the blood-brain barrier to get at a glioblastoma tumor. The disease works so quickly that there’s barely time to give an experimental drug a chance to show whether or not it is effective.

To give more experimental precision drugs a better shot at glioblastomas, the newly created Ivy Brain Tumor Center at the Barrow Neurological Institute in Phoenix has developed “accelerated trials” for its brain-cancer patients. A newly diagnosed patient is first given a dose of an experimental precision drug. The dose is too small to harm the patient (in case it turns out to be toxic, always a risk with new drugs) but big enough to reach the tumor. After surgery, doctors test the tumor to see if the drug had any effect. If it did, the patient continues with an increased dose. If not, the patient and doctor find out in time to take another course of treatment. “Speed is the key to finding drugs that work,” says Ivy director Nader Sanai. The approach has already turned up a personalized treatment that in one patient’s case beat back a form of brain cancer called malignant meningioma.

While all these approaches together are likely to bring us closer to the day when most cancers succumb to precision treatments, no one thinks that day will be here soon. Still, the move to personalized treatments is benefitting almost all cancer patients by sparing them the ordeal of a treatment that has little chance of working. “If you can look at a genomic or other test and know ahead of time whether or not a patient’s tumor will respond to a treatment, then even if only one out of 100 patients responds you’ve saved 99 patients from unnecessary complications and expense,” says Stanley Robboy, vice-chair for diagnostic pathology at the Duke University Cancer Center. “These drugs can cost $100,000, and can bankrupt families.”

Even that modest benefit, however, is being denied to most advanced cancer patients today. Health insurance companies frequently balk at paying for the genetic tests, which can cost as much as $10,000. “Medicare and some companies are starting to provide some coverage,” says Roychowdhury. “But it’s an arduous process to get reimbursed for the testing, and it’s hard to get the cutting-edge tests covered at all.” That’s one reason most of the top cancer centers in the country don’t routinely provide the testing to all their patients, even though virtually all experts agree that should be the standard of care everywhere for cancer.

When a patient does get a tumor tested and the test shows a match to a promising precision drug, insurers often refuse to pay for the drug too, says Roychowdhury. The insurers cover only drugs that have already gotten FDA approval as a standard treatment, after a long period of trials. FGFR inhibitors of the sort that rescued Linda Boyed and many others are still usually not reimbursable. Patients who become part of formal drug trial, as Boyed did, usually get the drug for free. But in some cases patients with the most advanced cancers—the ones who need experimental drugs the most—are excluded from trials. Drug companies and even academic researchers often want to avoid including very sick patients out of fear they’ll skew the results toward failure.

Payment isn’t the only obstacle to treatment. About 85 percent of U.S. cancer patients get treated at a community hospital, where they see an oncologist who treats many different types of cancers. Those generalists are typically not up on the latest tests and treatments, says Caligiuri. The hospitals who employ them don’t expect them to go through the time and expense of figuring it out. While highly regarded cancer centers place as many as a quarter of their patients on newer precision drugs, the percentage at most community hospitals is nearly zero.

What should patients do? “The first and most important thing I would say to anyone who has just received a diagnosis of cancer is that you need to get a second opinion from an oncologist who is a specialist in your type of cancer before you start any treatment,” says Caligiuri. “If your first treatment isn’t the optimal one, the tumor develops multiple resistances not only to that treatment but to other treatments that might have worked if you got them first.” When asked about other treatment options, community oncologists often insist that patients are best off starting treatment first. Some play on patients’ fears that even a short delay might hurt their chances of recovery—when in fact, it might save their lives.

Vanderbilt’s cancer center is trying to fix this problem by boosting the participation of community-hospital oncologists in precision-medicine initiatives. Its My Cancer Genome website helps doctors and patients find out what new treatments and trials might be available for any particular cancer—the site lists 4,000 trials. “It pains me when patients come to us and they’ve already been given a treatment that wasn’t going to help them,” says Vanderbilt’s Balser. “At that point the patient is behind the eight ball, and all we can do is try to pick up the pieces.” Like many other top cancer centers, Vanderbilt is also creating affiliations with community hospitals in its region to support those hospitals in gaining access to precision-medicine expertise, genetic testing and trials of the newest drugs. Vanderbilt already has forged such ties to nearly 70 hospitals in five states.

A growing roster of precision-medicine approaches will also help in preventing cancers from taking hold in the first place. Some imaging techniques, such as PET scans, are approaching the needed sensitivity and resolution to pick up a cluster of newly formed cancer cells so tiny that it can be blasted away on the spot with a beam of focused radiation. Such treatments would be convenient and come with fewer complications.

And why wait until someone gets cancer to look at genetic information? If everyone routinely got genetic screening to see which cancers they’re at high risk for, tests like PET scans, which can cost $7,000 or more, could be given selectively. Unfortunately, genetic screening itself is currently either too expensive or, in the case of consumer-focused genetic-testing companies like 23andMe, too unrefined to justify being rolled out to the entire population. But researchers and biotech companies are working on cutting the costs and raising the accuracy of genetic tests. “If we can know the cancer you’re at risk for, the right image every three years can change your life,” says Caligiuri.

Of course, it would be good to know that if a cancer does slip through, precision medicine will have just the right drug for it. That way cancer patients will have more to look forward to than just being made comfortable in their final days—the fate that was Linda Boyed’s, until it wasn’t.

July, 2019|Oral Cancer News|

They turn to Facebook and YouTube to find a cure for cancer — and get sucked into a world of bogus medicine

Source: The Washington Post
Date: June 25th, 2019
Author: Abby Ohlheiser

Mari pressed kale leaves through the juicer, preparing the smoothie that she believed had saved her life.

“I’m a cancer-killer, girl,” Mari told her niece, who stood next to her in the kitchen. The pair were filming themselves for a YouTube video.

Mari said she was in remission from a dangerous form of cancer, and the video was meant as a testimony to what she believed was the power of the “lemon ginger blast.” In went some cucumber, some apple, some bok choy, a whole habanero pepper.

While she pressed, she preached.

“I’m telling you, it’s anti-cancer,” Mari said. “It’ll kill your cancer cells.”

The video, first uploaded in 2016, remains on YouTube, but there’s an “important update” attached to the video’s description. It was written by Liz, the niece, a year later.

Mari’s cancer had returned, the note said, and she had died.

When Mari’s cancer came back, Liz wrote, her aunt opted to do chemotherapy. Her smoothie recipe remains online, with 506,000 views and counting. “I will not take down her videos,” wrote Liz, who declined to comment for this story, in the description of a follow-up video, “as they continue to help people.”

I found Mari’s videos without looking for them last fall, when a search for a smoothie recipe opened up an algorithmic tunnel to videos that claimed to know the secret to curing cancer. These tunnels, forged by Google searches and Facebook recommendations, connect relatively staid health and nutrition advice to fringe theories, false claims and miracle juices.

But the web of false, misleading and potentially dangerous cancer “cures” and conspiracy theories isn’t just there for those who stumble into it accidentally.More often it ensnares people who are reeling from bad news and groping for answers.

“People with a new cancer diagnosis are often feeling vulnerable and scared,” said Renee DiResta, a researcher who studies disinformation. The treatments for cancer, especially chemotherapy — which targets cancerous cells but can also kill or damage healthy ones — can come with significant, unpleasant side effects. Facing the horrors of such a diagnosis and treatment, some people start searching for information and community online.

What they find can be quite disturbing to medical professionals: home remedies that purport to cure diseases with baking soda, frankincense, silver particles.

Google and Facebook have promised to crack down on health misinformation in recent months, as links between anti-vaccine conspiracy theories and measles outbreaks in the United States become major news. But bogus health information cannot be eradicated from the Web with a shock of chlorine. Health conspiracy theories and false cures have polluted social media for years, abetted by companies that have been more focused on building out the plumbing than keeping the pipes clean of misinformation.

YouTube is trying to plug the holes that lead to videos like the Coldwell interview. When I ran the “cure for cancer” search again, in May, YouTube’s search results were a completely different story. The baking soda and Coldwell videos are still online, but no longer appear among the top pages of results. Instead, most of the top results came from major cancer research centers.

I asked YouTube about the change, which occurred just before we reached out to the company for comment on this story. I was told YouTube has started to treat search results for different types of topics differently: When its algorithms decide a search query is related to news or information-gathering on a topic like cancer, they will attempt to populate the results with more authoritative sources. The company said it is working with experts on certain health-related topics to improve results.

Even as YouTube patches “cure for cancer,” medical misinformation remains available and popular in other ways. People who are susceptible to cancer misinformation aren’t just typing keywords into YouTube. They’re also turning to fellow travelers who followed the same algorithmic tunnels to the same wells, where community members who have never met in person swap folk remedies and discuss the untrustworthiness of cancer doctors and pharmaceutical companies.

It’s tempting to think of medical misinformation as a technological problem in need of a technological solution, but that’s only part of it. The social media age has made humans part of the infrastructure of the Internet. And when it comes to medical information, it’s not just algorithms that direct online seekers who are trying to figure out how to cope with a bad diagnosis. It’s also other people.

For those facing a battle with a terrifying illness, hopeful anecdotes can be powerful. Anecdotes can turn seekers into believers, who can turn other seekers into believers. And on Facebook, those anecdotes continue to attract large audiences.

Even as Facebook works to limit the reach of anti-vaccine chatter, other medical misinformation is thriving — including bogus cancer cures. The boundaries between false medical beliefs are permeable: If you believe baking soda can cure cancer, you might also believe that the measles vaccine causes autism. (It doesn’t.) Behind each “alternative” theory of cures and causes lurks a deep suspicion of doctors, drug sellers and especially chemotherapy.

On Facebook, I easily found groups devoted to sharing “natural” cures for cancer, where people who have cancer diagnoses, or care for someone who does, asked other group members for ideas for how to cure it. “Cancer Cures & Natural Healing Research Group” has just under 100,000 members. I joined the closed group in February, identifying myself as a Washington Post journalist to the administrators.

The administrator for that group initially agreed to speak with me in private messages. But then I was blocked from the group and the administrator’s personal Facebook page. (The administrator did not return a follow-up email seeking comment.)

Facebook’s algorithms then began suggesting other groups I might like to join: “Alternative Cancer Treatments” (7,000 members), “Colloidal Silver Success Stories” (9,000 members) and “Natural healing + foods” (more than 100,000 members). I requested access to some of those groups, too, and several admitted me. People in the groups would ask one another for cancer-fighting advice. Some would be told to use baking soda or frankincense.

Rather than remove the groups, Facebook’s strategy to limit health misinformation centers on making it harder to join them unknowingly. Facebook said in an emailed statement that it “will alert group members by showing Related Articles” for any post already deemed false by Facebook’s third-partyfact-checkers, for instance.

Facebook is in the process of experimenting with how to address health misinformation beyond vaccines.One possibility might be alerting users who are invited to join a groupthat ithascirculated debunked hoaxes.

To this point, it’s been up to users to steer their peers toward or away from bad health advice. In one Facebook group, in February, a parent asked for advice on how to cure a child’s strep throat without antibiotics. The responses were split; some told the parent not to mess around and go to the doctor for antibiotics; others recommended colloidal silver and hydrogen peroxide. The National Capital Poison Center notes thateven food-grade hydrogen peroxide “should never be taken internally” unless extremely diluted, and that its use as an alternative therapy is “not based on scientific evidence.”

The world of alternative medicine seekers has its own celebrities. The names are like pass phrases. Post a question about natural cancer treatments in the right Facebook group, and you’ll get the names of supposed success stories that the pharmaceutical industry doesn’t want you to know about, and the instruction to “do your own research” into their stories.

“CHRIS BEAT CANCER! Look it up,” one Facebook user advised on a discussion thread.

So I did. The first Google result, when I ran the search in mid-May, was Chris Wark’s website, where Wark sells access to his method for $147. Below that, Google also suggested a few specific videos from Wark, promoting his “cancer fighting salad” and a lecture on how he beat cancer with “diet.”

Joanna Tackett, a spokeswoman for Wark, said in an email that Wark is not a doctor and does not provide medical advice, and that he has given free access to the paid program to hundreds of thousands of people.

Misinformation experts worry about “data voids,” created by the way information gets indexed online. If the only people discussing and looking up a particular term or phrase are those advocating a certain view, people searching that phrase would be shown information that supports that view.

“You can easily dominate search results for a term when you’ve created the term and only in-groups use it,” DiResta said. As social media companies identify and crack down on one search term, she said, 20 more might be rising in interest to take its place.

A Google spokesman said the company has worked to improve the accuracy of results for general health-related queries, but for very specific searches, such as “Chris beat cancer,” the system is designed to return “results from a diverse range of sources to help you form your own opinion — some of these provide information about the book, while others provide critiques.”

Google users searching for cancer information more generally might end up being served ads that promote dubious treatments, even if those sources don’t show up in the search results. In a search for “cure for cancer,” in May under incognito mode, the first result was an ad: “Stage four cancer survivor | thanks to natural cancer cures.” The ad promoted a cancer clinic in Mexico that appears to use unconventional treatments. Another Google spokesman said that ads promoting miracle cures are against the company’s rules, and that “if we find ads that violate our policies we remove them.”The ad was removed after I flagged it in an email.

For some searches, the results will be a tug-of-war between the believers and debunkers. Searching “Chris beat cancer” did not reveal a total data void. Google did show me two results challenging Wark’s claims about beating cancer with a healthy diet — but only after links to his YouTube channel, his website, the salad video, the lecture and Wark’s book. (When I ran the search later, after asking Google about the results, the challenges appeared a bit more prominently.)

One of the challengers is David Gorski, a surgical oncologist at Wayne State University School of Medicine who runs a blog, called Science-Based Medicine, devoted to medical bunk.

Gorski dove down the cancer conspiracy theory tunnels a decade ago, armed with science and determined to stanch as much misinformation as he could. Back then, he said, “all there really was were websites, blogs and discussion boards that were privately maintained. Their reach was nowhere near what Facebook came to be.”

Now, Gorski faces not only a more forceful tide of misinformation, but also intense blowback from those who have responded to his work. Accusations of wrongdoing from holistic healing sites and a wave of negative ratings on his Vitals.com profile have tainted the results of Google searches for his name.

Gorski’s debunking of Wark’s story was simple. Wark, who says he had surgery for his Stage 3 colon cancer but refused chemotherapy after, had a 64 percent chance of surviving five years with surgery alone, Gorski said. To get that figure, the oncologist used a tool called Adjuvant Online, which helps doctors assess the risks and benefits of potential therapies designed to prevent the recurrence of cancer after it is treated. The database used clinical trial data from a wide range of studies.

“Attempts to discredit me because I had surgery give far too much weight to my personal story, and miss the larger message. . . . People have healed all types and stages of cancer holistically (against the odds),” Wark said in a statement. “As a patient advocate, I am highly critical of the cancer industry and pharmaceutical industry,” he added, before saying that “I do not tell patients not to do the treatment.”

Surgery was the recommended primary treatment for Wark’s cancer, Gorski said. Chemotherapy is a secondary measure, meant to help prevent the cancer from coming back. Wark’s decision to forgo the post-surgery chemo was a risk, but by then the odds were in his favor.

After I was kicked out of the “Cancer Cures and Natural Healing Research Group,” I joined the similarly named “Natural Healing & Cancer Cures Research Group,” a closed Facebook group with more than 40,000 members. (Again I identified myself as a journalist while joining the group.)

That’s where I saw a post by Beth Anne Rekowski, who said her sister was sick with Stage 3 lung cancer.

“She and I both agree,” Rekowski wrote, “NO chemo or radiation.”

I called Rekowski to find out why.

Cancer has haunted Rekowski for much of her adult life. She wanted to be a nurse, but when her young son got cancer, she dropped out of nursing school. When he died in 1992, at age 4, Rekowski felt like she had died with him. Grief became activism, and she started raising money for charities that helped pay for cancer research. Later, her brother-in-law and her father were diagnosed. They died, too.

Rekowski had health issues of her own, and on the advice of a friend, she visited two naturopathic doctors. When their practices closed (Rekowski blames Big Pharma), she started seeking out remedies online. She found Facebook groups full of them.

“I used Facebook health groups just full-speed ahead,” Rekowski told me in a March phone interview from her mother’s home, where she is a full-time caretaker, “and I couldn’t believe what resources were on there. People, you know, to help other people because they’ve been there.” The Facebook groups were Rekowski’s lifeline.

She came to believe that chemotherapy, not cancer, had killed her son, father and brother-in-law. “Talk about parental guilt and remorse,” Rekowski told me.

Now, every sick relative is a chance for redemption. She advised her sister against chemotherapy or radiation to treat her lung cancer. Rekowski wanted her to use “naturals” and “immunotherapy” instead. And so she turned to her lifeline: the other members of the Natural Healing & Cancer Cures Research Group.

“If you can please give me a list,” she wrote in a post on the Facebook group, “in order of urgency and priority, of what you feel is imperative for nutrition, immune boosting, cancer killing, and whatever else you feel my sister needs.”

The responses flooded in by the dozens.

Salt water baths. 4 times a day.

B17 vitamin. . .CBD Oil full spectrum.

Add Wheatgrass juice to your sister’s diet.

Rekowski’s sister trusted her doctors: She did chemotherapy. Then she got an infection in her lungs, according to Rekowski, and in March her doctors said it was time to enter hospice. But Rekowski still had hope. She said she convinced her sister to wait on hospice, and went to a health food store that evening and bought a small fortune’s worth of essential oils.

She believed she could heal her sister’s lungs with fenugreek, licorice root, peppermint oil and oregano oil. Once her sister’s lungs were better, Rekowski believed, she could get to work curing her cancer.

In May, Rekowski wanted me to know that she believed her sister was a miracle. Once the infection had subsided, she texted to say the doctors had offered to start her sister on chemotherapy again. “My sister declined,” she wrote, and decided to continue with “natural supplements and natural oils.”

When Rekowski and I talked about health, it sometimes felt like we were talking about faith. The story she tells about her sister’s illness is meant as a parable about how chemotherapy can kill. She saw me, and the readers of this article, as potential converts.

I told Rekowski that I believed the groups she depended on exploited people’s desire for hope in the face of a bleak prognosis. When there are no options left, it’s powerful to find a community that tells you otherwise, even if those options turn out to be ineffective or even harmful.

But each time I challenged her with a counterpoint, Rekowski waved it away. The government was covering up evidence that supported her views, she told me. The treatments she found on Facebook worked for her, she believed, and that was all the proof she needed.

As a surgical oncologist, Gorski sees the effect that medical misinformation can have on the body. A couple of times a year, he says, he’ll treat “patients with neglected cancers, who try to treat their cancers naturally” before turning to medicine. The tumors have become “nasty ulcerating masses.” Even for patients with terminal diagnoses, traditional medicine can offer palliative care that can manage the pain and may be covered by health insurance.

After years of allowing health misinformation to spread, social media companies are beginning to treat the problem the best they can. They didn’t create cancer conspiracy theories, but experts like Gorski have observed how they made the problem worse. “It’s just way more concentrated and effective,” he said. “You go on Facebook and type in ‘alternative cancer cures’ and you’ll find stuff real fast.”

July, 2019|Oral Cancer News|

HPV vaccine benefits ‘exceed expectations,’ may lead to elimination of cervical cancer

Source: NBC News
Date: June 27, 2019
Author: Katie Sullivan

A new study suggests that the benefits of the vaccine extend to people who aren’t vaccinated — meaning the more people who are vaccinated, the better.

The HPV vaccine is far more effective than expected, with benefits extending beyond those who receive the vaccine, a study published Wednesday finds.

The new study, published in The Lancet, suggests that the more people who receive the vaccine, the better. That’s because vaccination not only reduces rates of HPV infection and the presence of precancerous cells in the cervix in people who receive the vaccine, it also reduces rates of HPV-related diseases in people who were not vaccinated.

The findings come as a U.S. federal advisory panel recommended Wednesday that the HPV vaccine be given to both men and women up to age 26.

HPV, or human papillomavirus, is the leading cause of cervical cancer. The virus can also cause other cancers, including cancers of the penis, head and neck, as well as conditions like genital warts.

The HPV vaccine was first introduced in 2006. Since then, more than 115 countries and territories have implemented it in their vaccination programs. The World Health Organization recommends that girls ages 9 to 13 receive two doses of the vaccine.

“The impact of the HPV vaccination has actually exceeded expectations,” said Lauri Markowitz, associate director of science for HPV at the Centers for Disease Control and Prevention, who worked on the study. “The trials showed that HPV vaccines are very effective, and data from the real world has confirmed that.”

Indeed, the reductions in HPV infections and precancerous cells “are a first sign that vaccination could eventually lead to the elimination of cervical cancer as a public health problem,” the study’s lead author, Mélanie Drolet, an epidemiologist at Laval University in Canada, said in a statement.

The Lancet study expanded upon a 2015 meta-analysis that had looked at the real-world effects of the vaccine. The new analysis was updated to include a total of 65 studies, which spanned eight years and included more than 60 million people living in 14 countries. Each study measured either changes in the number of new HPV infections, genital warts diagnoses or cases of abnormal cells associated with cervical cancer in countries before and after they adopted routine HPV vaccination in girls. (Two countries included in the analysis, the U.S. and Australia, also recommend the vaccine for boys.)

The impact of the HPV vaccination has actually exceeded expectations.

The researchers found that, in these countries, there was a significant decrease in the prevalence of two strains of HPV that cause 70 percent of cervical cancers, HPV 16 and 18. (There are more than 100 strains of HPV, 14 of which are known to cause cancer. The HPV vaccine protects against up to 9 strains.) In addition, there was a decrease in the prevalence of precancerous cells in the cervix, which can develop into cancer.

What’s more, in countries where at least half the population that was targeted for vaccination had actually received the vaccine, researchers saw evidence of herd immunity, meaning there was a decrease in the prevalence of HPV-related diseases even among those who weren’t vaccinated. This is because vaccination leads to fewer HPV hosts.

These countries also saw a decrease in genital warts diagnoses among unvaccinated boys and older women. And among girls within the age groups targeted for vaccination, there were fewer diagnoses of three HPV strains that the vaccine does not specifically protect against, a phenomenon called cross-protection. Countries in which people in multiple age groups received the vaccine also saw a greater decrease in HPV-related disease.

“This paper shows that with a broader age range that’s targeted, you’ll find greater impact in your vaccination program,” Markowitz told NBC News.

Lagging vaccination rates

Despite the widespread benefits of the vaccine, however, HPV vaccination rates in the U.S. are still lagging behind those of other adolescent immunizations. The U.S. was the first country to implement HPV vaccination for both genders, but the CDC has found that many parents and health care providers don’t yet see a need to vaccinate boys. Parents have also expressed concerns about the vaccine and its costs, the CDC found.

According to Debbie Saslow, managing director of HPV and gynecological cancers at the American Cancer Society, the lagging rates are not entirely because parents are against vaccinating their kids; rather, the way some doctors are presenting the vaccine also plays a role.

Two required vaccinations, for tetanus and meningitis, are administered at the same time as HPV, around age 12. Saslow said HPV is usually presented as an optional third vaccine at that time, and one that patients can delay another year.

“Providers often think they’re recommending all three vaccines, but they’re actually making the third, the HPV vaccine, optional,” Saslow told NBC News. “They’re just suggesting it or doctors are setting it apart from the other two in some way.”

The fact that HPV is a sexually transmitted infection could also be a hard concept for parents to come to terms with. Saslow said beliefs about sex may be a factor that deters parents from opting to have their children vaccinated against HPV.

“Despite all that, vaccination rates are continuing to grow,” she said.

Indeed, the number of adolescents in the U.S. who received at least one dose of the HPV vaccine has increased by 5 percent each year since 2013. The CDC recommendseveryone receive the first dose by age 12. Though adults up to age 45 can still be vaccinated, the vaccine may be less effective. And while the WHO does recommend that girls 9 to 13 get vaccinated against HPV, it does not yet recommend that all genders receive the vaccination. That could change in response to study results that continue to show the vaccine has substantial impact on public health.

Cancer prevention

That impact on public health is cancer prevention. Ultimately, that’s the “main goal of the HPV vaccination program,” Markowitz said. “We’re seeing an impact on one of the HPV outcomes that is close to a cancer outcome.” (Because cervical cancer can take decades to develop, it’s not yet possible to study the effects of the vaccine on cervical cancer rates, Drolet noted in the statement.)

In particular, the study found the HPV vaccine led to a reduction in the rates of abnormal pap smear findings. Pap smears are used to detect abnormal cells in the cervix that can sometimes develop into cancer. Five to nine years after a population was vaccinated against HPV, the researchers found a more than 50 percent reduction in cases of these pre-cancerous cells in girls 15 to 19. In vaccinated women 20 to 24, there were one-third fewer cases of these cells.

A separate study, published in April in The BMJ, found a 90 percent reduction in cases of pre-cancerous cells in young women in Scotland within the first decade of introducing the HPV vaccine.

But vaccination is only one piece of cervical cancer prevention; screening is also necessary.

Whether or not a person has received the HPV vaccine, getting cervical cells regularly tested — through Pap tests and HPV screening — is still a crucial to reducing cases of cervical cancer and early detection, said Diane Harper, senior associate director of the Michigan Institute for Clinical and Health Research. Rates of invasive cervical cancer dropped significantly in the U.S. when cancer screening was introduced in the 1940s, and there were less than half the number of cases in 2007 that there were in 1973, largely due to screening.

“Vaccination and screening together make a program,” Harper told NBC News. “Very few HPV cases progress into cancer, but the only way we’re going to find those that do is through the screening program.”

June, 2019|Oral Cancer News|

Meet the New York couple donating millions to the anti-vax movement

Source: The Washington Post
Date: June 19th, 2019
Authors: Lana H. Sun & Amy Brittain

A wealthy Manhattan couple has emerged as significant financiers of the anti-vaccine movement, contributing more than $3 million in recent years to groups that stoke fears about immunizations online and at live events — including two forums this year at the epicenter of measles outbreaks in New York’s ultra-Orthodox Jewish community.

Hedge fund manager and philanthropist Bernard Selz and his wife, Lisa, have long donated to organizations focused on the arts, culture, education and the environment. But seven years ago, their private foundation embraced a very different cause: groups that question the safety and effectiveness of vaccines.

How the Selzes came to support anti-vaccine ideas is unknown, but their financial impact has been enormous. Their money has gone to a handful of determined individuals who have played an outsize role in spreading doubt and misinformation about vaccines and the diseases they prevent. The groups’ false claims linking vaccines to autism and other ailments, while downplaying the risks of measles, have led growing numbers of parents to shun the shots. As a result, health officials have said, the potentially deadly disease has surged to at least 1,044 cases this year, the highest number in nearly three decades.

The Selz Foundation provides roughly three-fourths of the funding for the Informed Consent Action Network, a three-year-old charity that describes its mission as promoting drug and vaccine safety and parental choice in vaccine decisions.

Lisa Selz serves as the group’s president, but its public face and chief executive is Del Bigtree, a former daytime television show producer who draws big crowds to public events. Bigtree has no medical credentials but holds himself out as an expert on vaccine safety and promotes the idea that government officials have colluded with the pharmaceutical industry to cover up grievous harms from the drugs. In recent weeks, Bigtree has headlined forums in ultra-Orthodox Jewish communities in Brooklyn and Rockland County, N.Y., both areas confronting large measles outbreaks.

“They should be allowed to have the measles if they want the measles,” Bigtree told reporters outside the Brooklyn meeting on June 4. “It’s crazy that there’s this level of intensity around a trivial childhood illness.”

Thanks largely to the Selzes’ donations, ICAN is now the best-funded among a trio of organizations that have amplified concerns about vaccines. ICAN brought in $1.4 million in revenue in 2017, with just over $1 million supplied by the Selz Foundation, according to tax filings.

The Selzes and the groups they support are hardly the only purveyors of anti-vaccine ideas. Environmental attorney Robert F. Kennedy Jr., a nephew of the late president, runs the Children’s Health Defense, a charity that promotes a similar agenda; it brought in $727,000 in 2017, according to tax filings. Barbara Loe Fisher, who says her son was injured by vaccines, runs a Virginia-based nonprofit that fights legislative efforts to tighten vaccine requirements. Her group, the National Vaccine Information Center, brings in about $1 million a year, according to its 2018 tax documents.

Though they are separately organized, the three groups reinforce one another’s efforts. Kennedy and Bigtree often appear together at public events, while ICAN’s website includes a link to Fisher’s group. Bigtree’s weekly live stream broadcast, which ICAN promotes, frequently features Kennedy.

New York City Health Commissioner Oxiris Barbot, who has battled the nation’s single worst measles outbreak since October, said she never heard of the Selzes. “But I do know the science and the science is clear — the MMR vaccine prevents measles,” she said, using the common acronym for the vaccine that prevents measles, mumps and rubella. “Any suggestion to the contrary is a threat to the health and well-being of New Yorkers.”

The Selzes did not respond to emails or phone messages. A woman who answered the telephone at the couple’s home on Manhattan’s Upper East Side declined to identify herself. “There’s nothing to say,” she said before hanging up.

Bernard Selz, 79, has more than 40 years experience in the securities industry and runs Selz Capital, a hedge fund that holds a portfolio valued at more than $500 million, according to recent filings from the Securities and Exchange Commission.

Lisa Pagliaro Selz, 68, worked for Manufacturers Hanover Trust and Tiffany and Co. Since 1993, she has helped manage the Selz Foundation “with a focus on humanitarian, educational, geriatric, homeopathic, animal causes and the arts,” according to a news release issued by LaGuardia Community College Foundation, where she was a board memberfrom 2011 to 2016.

The Selzes’ sons — both young adults — declined to comment. Friends and family members reached by The Washington Post said they were unable to shed light on the Selzes’ philanthropic choices.

“This is a topic we don’t discuss,” said Marilyn Skony Stamm, a business executive and close friend of Lisa Selz. “We have differing opinions.” Stamm declined to elaborate, except to say that she values her friendship with the Selzes, whom she called “an incredibly philanthropic family.”

Support for a key figure

Tax filings for the couple’s charitable foundation show they began supporting the movement in 2012, when they gave $200,000 to a legal fund for Andrew Wakefield, one of the most important figures in the anti-vaccine movement.

Wakefield, a former gastroenterologist, rose to fame in 1998 after publishing a paper in the Lancet, a respected British medical journal, that linked the MMR vaccine to autism in eight children. An investigation by Britain’s General Medical Council, which regulates doctors, found Wakefield guilty of professional misconduct in 2010 and revoked his license. The panel concluded that Wakefield had financial and ethical conflicts of interest, and had acted “dishonestly and irresponsibly.” Twelve years after the study’s publication, the Lancet retracted it.

Wakefield declined to comment for this report. He has repeatedly denied wrongdoing and said he was motivated by children’s suffering.

“You have probably heard in the newspapers and elsewhere that I am guilty of scientific fraud,” Wakefield said via Skype to a forum this spring in Rockland, N.Y. “And I want to reassure you that I have never been involved in scientific fraud. What happened to me is what happens to doctors who threaten the bottom line of the pharmaceutical companies.”

By 2012, Wakefield had moved to Austin, where supporters began raising money for the Dr. Wakefield Justice Fund, an effort to sue the journalists who had questioned Wakefield’s findings. The fund was “established by friends and supporters . . . to respond to false claims made against Dr. Wakefield; expose the corrupting influence of special interest groups behind these allegations and protect Dr. Wakefield’s work from both profit- and politically-motivated censorship and retribution,” an archived version of the fund’s website says.

Wakefield’s lawsuit was unsuccessful, but the Selz Foundation found other ways to support his work. After he launched two nonprofits in 2014, the Selz Foundation donated $1.6 million to the groups over the next several years, according to tax records. One, the AMC Foundation, was registered as a public charity to fund documentaries about public health issues. The other was a Texas nonprofit corporation.

Wakefield used the money to help fund a documentary film called “Vaxxed,” which details his allegations about a government coverup of vaccine dangers. After filming, he and other producers traveled the country in a black “Vaxxed” bus that stopped at churches, libraries and chiropractors’ offices to record interviews with parents who believe their children had been injured by vaccines.

“Virtually every dollar in this film to date has been donated by a handful of brave parents and philanthropists,” the “Vaxxed” website says. In the credits, the film lists the Selz Foundation first among 16 donors who financed the production.

The film also introduced a new face to the anti-vax movement: Bigtree. Once a television producer of “The Doctors,” a daytime talk show filmed in Hollywood, Bigtree signed on to co-produce the film, which was released in 2016.

Tara Smith, an infectious disease expert at Kent State University who hasresearchedthe anti-vaccine movement, called the film “an effective piece of propaganda” that uses “heart-wrenching stories of children supposedly harmed by vaccination.”

For example, one mother featured in the filmsaid her son developed autism after he was inadvertently given a double dose of the MMR vaccine. Filmmakers provided no medical documentation to support the claim, and the mother has said publiclythat her son’s medical records were stolen from her apartment.

The stories in the film “frequently fall apart when scrutinized,” Smith said.

Bigtree said the film’s critics are “spreading misinformation” unless they “have proof that the exact stories of vaccine injury by the parents that appear in ‘Vaxxed’ are false.”

Since the publication of Wakefield’s Lancet paper, 21 studies have investigated vaccines and autism. None has found evidence of a link. The latest and largest study published this spring involved 657,461 Danish childrenborn between 1999 and 2010. Experts note the first symptoms of autism often appear when children are about 12 months old — the same age they receive their first MMR shot — leading many parents to blame vaccines.

Last year, Wakefield dissolved the two nonprofits, according to Texas business filings and Wakefield’s co-founder, Polly Tommey. During its brief life, the AMC Foundation doled out grants exclusively to Autism Media Channel LLC, a private company that was also run by Wakefield, Tommey and a third partner, according to tax filings.

According to the filings, the grants supported an educational film project.

Attorney Marc Owens, a former head of the IRS division responsible for monitoring tax-exempt organizations, said the arrangement is “a very suspicious transaction.”

“They transferred all of their income, it appears — with the exception of a small amount — to, basically, themselves,” Owens said. “It is extremely unusual to see this sort of expenditure from a public charity.”

In an interview, Tommey defended the transactions.

“Everything was cleared legally, and we stuck to our mission,” she said.

Tommey said she is now focused on the upcoming release of a sequel to “Vaxxed” that will include information about Gardasil, a vaccine that protects against several strains of the human papillomavirus. Wakefield, meanwhile, has launched another public charity to fund educational film projects, according to tax filings.

The same year “Vaxxed” was released, Bigtree established the Informed Consent Action Network. The Selz Foundation donated $100,000 that first year — 83 percent of the charity’s funding, according to tax records.

June, 2019|Oral Cancer News|

Researchers zero in on new class of oral cancer drugs

Source: UT Health San Antonio
Date: June 3, 2019
Author: Rosanne Fohn

SAN ANTONIO (June 3, 2019) ― Researchers at UT Health San Antonio have identified a potent new class of anti-cancer drugs that target oral cancer cells while leaving other cells unharmed. The new drug class also has shown promise in stopping other types of cancer.

In two recent papers, a research team led by Cara Gonzales, D.D.S., Ph.D., developed a new class of drugs broadly referred to as capsazepine analogs and tested them against oral and other types of cancers in preclinical and animal studies.

Low survival rate for advanced and recurrent oral cancer

“Our main goal was to develop cancer-targeting drugs to effectively treat advanced and recurrent oral cancer,” said Dr. Gonzales, an associate professor in the School of Dentistry’sDepartment of Comprehensive Dentistry. “This is important because oral cancer is a deadly disease with a five-year survival rate of only 40 percent,” she said. “Oral cancer is rarely diagnosed in its earliest stages when it can be cured. About 75 percent of patients come to the clinic with advanced disease, dramatically lowering their chance of survival,” she said.

The team’s previous research showed that capsazepine is a potent cancer killer. Capsazepine is a synthetic cousin of capsaicin, the substance in chili peppers that gives them their heat. While studying oral cancer pain, Dr. Gonzales’ team discovered that capsazepine has significant cancer-fighting activity through a cancer-selective mechanism of action. In collaboration with the Center for Innovative Drug Discovery, a partnership of UT Health San Antonio and The University of Texas at San Antonio, more potent capsazepine analogs were developed with significantly stronger anti-cancer efficacy in mouse models of oral cancer and no adverse effects on healthy tissue.

Two papers show progress

In a paper published in Bioorganic & Medicinal Chemistry in November, Dr. Gonzales’ team describes their work synthesizing 30 new compounds whose chemical structures were based on the parent compound, capsazepine. The compounds were then screened based on their ability to kill oral cancer cells in culture. Lead compounds CIDD24, CIDD99 and CIDD111 were validated in mouse models of human cancer.

This data informed additional preclinical and animal work outlined in the second paper, published in March in the Journal of Oral Pathology & Medicine. These studies zeroed in on the most effective lead compound, CIDD99. This compound eradicated the tumors while leaving normal healthy tissue unaffected. An added benefit was that CIDD99 also sensitized oral cancer cells to traditional chemotherapies, meaning that much lower doses of chemotherapy could be used with dramatically greater effectiveness and fewer side effects.

Drugs effective against other types of cancer

CIDD99 was also effective against a panel of other cancer types and therefore may provide a new therapy for multiple cancers with fewer side effects than traditional chemotherapies. “As we got further into our research, we found that CIDD99 also is effective against non-small-cell lung cancer, triple-negative breast cancer and prostate cancer cells,” Dr. Gonzales said.

“These results are very exciting because no new drugs have been developed in over 40 years to treat oral cancer. While immunotherapy works very well, it is only effective in a small group of patients. Our compounds may provide a new class of drugs that may be effective for all oral cancer patients,” she added.

Patents filed on three drugs

UT Health San Antonio and UTSA have a patent on the three drugs through the Office of Technology Commercialization, which serves both universities as a catalyst for stimulating innovation and entrepreneurship among faculty, staff and students and industry partners through the UT System.

Researchers working toward human clinical trials

The research team is now working with venture capital companies to apply for Small Business Technology Transfer grants and an American Cancer Society Mission Boost Phase 1 grant to conduct additional preclinical studies that are required before applying to the U.S. Food and Drug Administration for an Investigational New Drug (IND) status. An IND designation authorizes the administration of an experimental agent in humans enabling future clinical trials.

“These grants will help us generate additional data regarding safety, toxicity and how they work in the body that will get us ready to submit our FDA application for human trials,” Dr. Gonzales said.

The research was supported by an Institute for Integration of Medicine and Science Clinical and Translational Science Pilot Award and a San Antonio Life Science Sciences InstituteCenter for Innovative Drug Discoveries Pilot Grant.

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The University of Texas Health Science Center at San Antonio, now called UT Health San Antonio®, is one of the country’s leading health sciences universities. With missions of teaching, research, healing and community engagement, its schools of medicine, nursing, dentistry, health professions and graduate biomedical sciences have produced 36,500 alumni who are leading change, advancing their fields and renewing hope for patients and their families throughout South Texas and the world. To learn about the many ways “We make lives better®,” visit www.uthscsa.edu.

June, 2019|Oral Cancer News|