Biennial Report 2020-2021 - National Center for Health ...
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Biennial Report 2020-2021
2
MESSAGE FROM THE PRESIDENT
nized 18 ineffective cancer drugs ple over the age of 65. These
that are still being prescribed, we patients are often overlooked in
continue to inform doctors and clinical trials, and we advocated to
patients about those drugs. Only change that.
one was proven to improve quality
We continue to work with hun-
of life even though these new inef-
dreds of patient advocates from
fective cancer drugs cost just as
across the country on how to make
much or more than the ones that
their voices heard to improve med-
are effective – up to $170,000 per
ical research on treatments and
patient.
prevention.
We persuaded Congress to pro-
We made our free patient booklets
tect all Americans’ access to af-
widely available to cancer patients
fordable health insurance, includ-
and family members across the
ing those with pre-existing medical
country.
conditions.
We trained researchers and jour- Whether we were explaining well-
nalists to better communicate the established and complicated
In 2020 and 2021, we helped medical research information to
thousands of adults and children results of research on which treat-
ments are best for which patients, families and health professionals,
get the best possible medical or making sense of controversial
and publicized important new
treatment; we published articles new research on vaccines,
study results.
and reports that will continue to medications, or toxic chemicals in
help physicians provide better We urged the Food and Drug our homes and communities, we
medical treatment; and we had a Administration (FDA) to require scrutinized research and provided
major impact on the many invisible long-term studies of the safety and useful, understandable, and
government policies that can effectiveness for all medications, unbiased information to patients,
reduce or increase our risk of implants, and vaccines, so that consumers, policy makers, and the
COVID-19, cancer, heart disease, consumers could make well- media.
diabetes, and other major diseases. informed decisions for themselves
Here’s how: and their children. Our research, training and
educational efforts continue to
Our health helplines helped wom- We testified before the Consumer represent the interests and needs
en, men, and children like you Product Safety Commission, urg- of all the men, women, and
across the country. We helped peo- ing them to ban chemicals in chil- children who are otherwise left out
ple decide which diagnostic tests dren’s products and playgrounds of life-saving public health
and treatments were best for them, that can cause early puberty, decisions. As always, we will
and which were likely to do more asthma, attention problems, and continue to advocate for all Ameri-
harm than good. We helped people cancer. We also urged them to ban cans on matters that are crucial to
reduce their risk of all types of ill- unsafe sleep products for infants the health of adults and children
ness and choose the safest and and require safer home elevators.
nationwide.
most effective treatments.
We urged city and state legislators
We scrutinized all the studies of to change laws that have resulted
COVID treatments, vaccines, and in lead and toxic chemicals in arti-
other prevention strategies, and ficial turf and playgrounds, and
made that unbiased information responded to community mem-
available to health professionals, bers’ requests for information.
patients, and journalists across the
country. We testified before the FDA to en-
sure that medical treatments are Diana Zuckerman, Ph.D.
After our groundbreaking study in analyzed for their effectiveness in
JAMA Internal Medicine scruti- women, people of color, and peo-
3
PROGRAM AND POLICY HIGHLIGHTS
Our Largest Program: The Cancer Prevention and Treatment Fund
cancer for which the Cometriq (also called Cabometyx) that
drugs were not had no benefit to survival compared to
proven to placebo, and also caused patients to
work. When drugs have a worse quality of life.
are granted acceler-
Meanwhile, the ineffective cancer drugs
ated approval, it is
remain on the market, and patients,
based on very pre-
Medicare, and insurers are still paying
liminary data with
for them. When we asked FDA officials
the requirement
why they haven’t rescinded the approval
that the companies
of ineffective cancer drugs, they stated
do a better study to
that they still think those drugs might be
make sure the bene-
effective. They pointed out that once a
fits of the drug for
cancer drug is approved, it is very
Do Expensive Cancer that specific type of cancer outweigh the
difficult to keep patients in a clinical
Treatments Work Better? risks. The studies showed that these 3
trial long enough to know if the drug
drugs were not proven to work for 6 dif-
Cancer drugs often drain a actually saves lives.
ferent types of cancer, and yet they are
patient’s energy and joy for living,
still approved for them. That is costing In other words, the FDA is approving
but don’t always provide much
patients and Medicare billions of dol- cancer drugs on the basis of short-term,
benefit. In some cases, the cancer
lars. As of August 2021, Opdivo is no inconclusive data knowing that we may
may stop growing or even begin to
longer approved for previously treated never know if those drugs truly are safe
shrink, but ultimately the patient
liver cancer, and Keytruda will no longer and effective or not.
may not live even a day longer.
be approved for stomach cancer by the We Need New Cures
Cancer drugs do not have to be proven end of 2021, but the FDA had not re-
to prolong anyone’s life in order for the scinded other approvals for these 3 can- Some physicians and patients
Food and Drug Administration (FDA) to cer drugs, despite the evidence that believe the FDA blocks access to
approve them. And once the drugs are these treatments do not work, have seri- effective new cancer
approved, thousands of patients start ous risks, and cost a fortune. treatments. We disagree. We
taking these drugs and paying for them, strongly support the FDA’s
Our Cancer Study “Expanded Access” program,
not realizing when there is no evidence
of a meaningful health benefit. However, The Cancer Prevention and Treatment which provides patients access to
the FDA often requires that companies Fund published a study in JAMA experimental drugs that have at
keep studying the drugs to find out if Internal Medicine of 18 cancer drugs least some evidence that they
those medicines are actually extending that had not been proven to help work.
lives. patients live longer. We found that only
The FDA protects patients by requiring
one was proven to improve quality of
FDA is Failing Cancer well-designed clinical trials to provide
life. Two made quality of life worse, and
Patients evidence that a new cancer drug has
the other 15 new cancer drugs either did
benefits that outweigh the risks. Alt-
In April 2021, the FDA held a public not improve quality of life, or there is
hough the standards aren’t as high as
Advisory Committee meeting on an unu- no research evidence to know if they do
they should be, the FDA requires
sual topic: What to do about cancer or not.
evidence that the patient has a good
treatments that are not proven to
We were shocked that the new cancer chance of benefitting at least in the short
work! The focus was on Keytruda, Opdi-
drugs that are not proven to bene- term. In contrast, an experimental drug,
vo, and Tecentriq. All 3 are cancer drugs
fit patients in any way cost just as no matter how “promising”
that are proven to work for a small per-
much as the ones that are effective is not proven to have benefits that out-
centage of patients with some types of
– up to $170,000 per patient. From weigh the risks. It is still being studied,
cancer, but were also granted
our study, the most expensive of the 18 and it might not have been tested on
“accelerated approval” for other types of
cancer drugs was a thyroid cancer drug, more than a few patients.
“NCHR is a constant advocate for a safer healthcare system. I am so thankful for their commitment
and their willingness to help me and so many others." - Sasha T.
4
“I sailed through the surgery, and am thrilled – a dramatic change in course for me after discovering
your work. My gratitude to you is beyond words.” —Harriet Lerner, psychologist and best-selling author of The
Dance of Anger
Some patients are willing to take the
chance on experimental drugs, but they
should be told that they are
experimental, and they shouldn’t have
to pay for them. Experimental drugs
should be provided for free by the
company that makes them because
companies greatly benefit from
information provided by patients in
well-designed studies.
Unfortunately, even ineffective cancer
drugs can cost well over $250,000 per
patient. The prices are usually much
higher in the U.S. than in other coun-
tries. In other words, U.S. patients are
subsidizing the cost of cancer drugs in
other countries. That isn’t fair, and
we’re working with Congress to make
all drugs more affordable.
Prevention
without any treatment. Treatment be so frightened by the word "cancer"
Cancer can be prevented, thanks
is almost always chosen. Howev- that they will make a hasty treatment
to research proving which of your
er, experts cannot yet predict decision they will later, and forever, re-
habits can reduce your chances of
which new cancers will go away gret. Fully informed of their options and
developing cancer or of cancer
and which will become dangerous. free to choose, some women will decide
coming back after treatment.
to have a mastectomy that is not medi-
In addition, recent research shows
Whether the research is on diet, cally necessary, but thousands more will
that millions of women undergo-
exercise, smoking, vaping, radiation, never even be told when there are safer
ing mastectomies for early stage
carcinogens in artificial turf and alternatives available. CPTF is working
breast cancer (stages 1, 2 and 3a)
playgrounds, or medications that can with Congress, health professionals, and
would live longer if they under-
cause cancer, we’re scrutinizing what is insurance companies to improve the
went lumpectomies instead. Ex-
known and not known, and providing quality of care available to all patients.
perts agree that most women with these
the information to you and to policy
pre-cancers or early-stage cancers will By explaining complicated research
makers for free.
live longer if they undergo lumpecto- results in clear, everyday language and
Working to Reduce mies instead (also called breast conserv- making that information widely
Overtreatment of Breast ing surgery). available, we can reduce the number of
Cancer mastectomies and improve cancer
Yet, as unbelievable as it may seem,
Every year, more than 250,000 treatment at the same time. We can
medically unnecessary mastectomies are
women are diagnosed with breast reach this goal by making sure that
increasing in the United States, not de-
cancer or "pre-cancerous" women understand their treatment
creasing. Some women will undergo a
conditions such as ductal options, doctors communicate more
mastectomy because the surgery is less
carcinoma in situ (DCIS) that may clearly with their patients, insurance
expensive than a lumpectomy—a deci-
never become cancer. DCIS and companies cover the best treatments,
sion that may be made by their insur-
other types of stage zero breast and doctors and patients know the best
ance company, not by them. Some will
cancer will sometimes go away ways to prevent cancer.
5
Our Work to Fight the COVID Pandemic
When the COVID-19 pandemic was and what treatments were proven to and CDC about the studies. We
announced in 2020, we immediately pro- work and which ones probably did- praised the large, randomized clini-
vided science-based information to the n’t. cal trials but expressed concerns
public, to health professionals, and to about the small number of elderly
2. We spent hours talking to journal-
journalists. It was not easy – at the same patients and people of color for
ists, who were justifiably confused
time that we had to adjust to leaving our whom information was available
about the conflicting information
office and working from home, we were about how well the vaccine
they were getting. Fortunately, in
analyzing all the information that was worked. We also criticized the deci-
July 2020 we received support from
publicly available, some of which was sions by the vaccine manufacturers
the Patient Centered Outcomes Re-
science based, but most of which was to stop the randomized trials early,
search Institute (PCORI) that ena-
based on speculation, wishful thinking, making it impossible to know when
bled us to host 9 teleconferences for
or scientific guestimates. booster shots would be needed.
reporters that featured unbiased
There were four major ways that we experts who could explain some of 4. We published an article in
were important voices throughout the the most confusing information the American Journal of Public
pandemic: about COVID. These teleconferences Health, explaining how the criteria
were attended by more than 180 for “Emergency Use Authorizations,”
1. We provided free information in
journalists from across the country, which allowed COVID tests, treat-
easy-to-understand summaries of
enabling them to report information ments, masks, and vaccines to be
what was known and what was not
accurately to millions of Americans. sold in the U.S., were not as scientifi-
known about the virus: Who was
cally sound as the usual FDA stand-
most at risk, how to prevent getting 3. As information became available
ards for approval. We encouraged
infected or infecting others, which about the vaccines, we scrutinized
the FDA to switch to FDA approval
COVID tests were most accurate, the data and testified before the FDA
standards as soon as possible.
Which Diagnostic Tests and Treatments are Best?
Every year, the FDA reviews thou- improve these policies to prevent We’re working to change that.
sands of new diagnostic tests and products that are meant to help us from
other medical devices and allows harming us instead.
them to be sold—without first
We’ve worked with award-winning
requiring clinical trials. As long as
filmmakers who created and disseminat-
the products are considered
ed documentaries about medical im-
“substantially equivalent” to
plants and other devices that have risks
others on the market (a loose
that aren’t explained to patients or their
definition that often does not
physicians.
require that they be made of the
same material or use a similar In 2021, Explant, a documentary about
mechanism of action), they can be women who became seriously ill from
sold in the U.S. breast implants, was released at the
Tribeca film festival. In 2018, The
It’s not surprising, therefore, that many Companies that make drugs pay experts
Bleeding Edge, a documentary about
of these devices are later recalled to ensure that the research results that
other unsafe medical implants, was re-
because they are found to be dangerous. they like get reported on TV, radio,
leased at Tribeca and is still available on
In addition, the vast majority of newspapers, and social media. But when
Netflix.
prescription drugs and implanted an important study shows that a popular
devices are approved on the basis of Training Researchers to treatment is not effective, or is harmful,
short-term safety and may not be proven Explain Their Study who is going to pay a PR company to get
safe for long-term use. Some Results the word out? Thanks to support from
prescription drugs for common Researchers across the country the Patient-Centered Outcome Research
ailments, like diabetes, can even are doing life-saving work, but it Institute (PCORI) we are helping re-
increase the chances of patients can take years for the results of
searchers learn how to communicate
those studies to change the
developing cancer. We are working to practice of medicine. their results in interesting, understanda-
6
“I believe there is so much more that needs to be done to investigate all these items put into
the body especially that we were told they were “safe”...Thanks for all your hard work and
resources” -Christina P
• Protect patients and protect the via-
bility of Medicare by restricting the
unsafe use of Aduhelm, a drug for
Alzheimer’s Disease that is not prov-
en to work but is proven to cause
brain swelling.
• Improve the accuracy of genetic
tests, cancer screening, and other
diagnostics by reversing policies that
have made it illegal for the FDA to
ensure the accuracy of lab-developed
in vitro diagnostic tests.
• Promote safer and more effective
medical devices, such as joint
replacements, mesh,
mammography, contraceptive
ble ways to reporters, and we are training among health policy researchers devices, power morcellators, spinal
reporters to ask the right questions to and scholars. implants, cardiac implants, and
determine the quality of new research breast implants.
findings and the implications for We are the most active public • Promote safer and more effective
patients. health organizations on FDA pharmaceuticals, including Yaz and
issues. other birth control pills containing
In 2019 and 2021, we held 2 successful
drospirenone.
workshops for health reporters, teaching
As can be seen in the list of activities on • Ensure that antibiotics are safe and
journalists about the nuances of research
pages 9-10, we influence policies, educate effective, and reduce resistant
results, as well as training researchers to
Members of Congress and their staff; bacteria by preventing the overuse of
make their results understandable to
publish in medical journals and on popu- older antibiotics in animals and hu-
reporters. Although the pandemic re-
lar websites; and speak at dozens of pub- mans.
quired us to postpone our second work-
lic meetings. No other nonprofit • Improve legislation aimed at
shop from March 2020 to August
organizations participate as close to that improving FDA decision-making and
2021, the pandemic also resulted in the
level; at many meetings, we are the only Medicare coverage.
opportunity to host 9 monthly one-hour
public health/consumer safety entity that
live online teleconferences on important
is speaking. For several years, we’ve been on the fore-
COVID-related research issues, such as
front of efforts to ensure that medical
the risks to children, the initial research
In 2020 and 2021, the pandemic inter- products have been adequately tested
results for COVID vaccines, the research
fered with our usual schedule of in- and analyzed in all kinds of patients
standards for Emergency Use Authoriza-
person meetings on Capitol Hill as well in order to determine safety and effec-
tions, variants, and other hot topics.
as staff briefings. We expect that situa- tiveness for women and men, people of
tion to improve in later 2021. color, and adults of all ages. We have
Prevention and Patient approached this issue by helping to write
Safety We conduct research that can improve
and support legislation, by testifying
healthcare, and we publish the results in
about the lack of such information at
Safety and Effectiveness of medical, public health, and policy
FDA public meetings, by conducting re-
Medical Products journals.
search to document the lack of such data,
Our work on the safety and effec- In addition, we are fighting to: and by meeting with decision makers at
tiveness of medical products has • Improve the quality of health care the FDA and Congress.
made us a very visible presence in through studies that determine
the media, at the FDA, in the non- which treatments work best for Despite our small size, NCHR continues
profit health policy and consumer which patients. to be instrumental in organizing non-
community, and increasingly profit organizations to fight for safer,
7
“I really appreciate all the work you have been doing for me and all the women.”
-Priscilla D
effective, and more affordable medical Action. In 2020 and 2021, we expanded justification for covering removal. We
products, and is the major consumer our membership to also include the are helping women with implant prob-
voice on medical devices. We help non- Executive Director of Our Bodies Our- lems obtain coverage for removal when
profit organizations, consumers, and selves and the CEO of the data analysis they can meet the criteria, and if not, we
media who turn to us for unbiased infor- group Device Events. Together, we de- encourage them to consider other ways
mation on a wide range of controversial veloped a black box warning and Patient to afford removal.
topics. Despite our small size, we contin- Informed Consent Check List, and urged
ue to be instrumental in organizing pa- the FDA to require both be made availa-
We also provide women with a credible
tients and organizations to fight for saf- ble to all potential implant patients.
source of information about breast
er, more effective, and more affordable When the FDA released a proposed implants at www.breastimplantinfo.org.
medical products. We are the major con- guidance with a draft black box warning
Unlike most breast implant websites, we
sumer voice on strengthening the stand- and check list in 2019, we met with FDA
are not selling anything. That means the
ards for cancer treatments, to make sure officials to urge them to improve their
information on our website is not paid
they improve patient’s lives. draft in 2019, 2020, and 2021. for by plastic surgeons or breast implant
makers who want these women as
customers. The website provides the
Helping Women Harmed In addition to our work with the FDA,
most accurate information available, so
By Breast Implants we continued to provide research-based
that women can make choices that are
We continue to be interviewed information about breast implant illness
best for them.
frequently about the well-documented and BIA-ALCL to patients and their ad-
evidence that breast implants cause vocates, and to the leadership of the
The Evidence is In: Obesity
symptoms known as “breast implant American Society of Plastic Surgeons,
and Lack of Exercise
illness.” We helped organize several re- including advice on how to improve the
Increase the Risk of Can-
mote meetings with patient advocates accuracy of information about breast
cer, Heart Disease, and
and FDA officials, which gave the pa- implant risks on their website. We also
Early Death
tients the opportunity to urge FDA offi- reached out to the Centers for Disease
Everyone knows about the obesity
cials to warn patients about breast im- Control and Prevention (CDC) to en-
epidemic and its impact on diabe-
plant associated anaplastic large cell courage them to add a billing code for
tes, but did you know obesity can
lymphoma (BIA-ALCL) and other seri- breast implant illness and BIA-ALCL.
also increase your chances of de-
ous health problems they had developed
veloping cancer? Girls and boys
because of their breast implants. As a
We have surveyed and assisted are starting puberty as early as 8
result of these meetings and other work,
more than 6,000 women with years old, and one reason is that
the FDA is considering what infor-
implant problems. Many had obesity affects hormones, which
mation patients should be given about
previously tried but failed to get could also increase the risk of
these risks.
insurance coverage to remove breast cancer, prostate cancer,
In 2019, we started a Breast Implant their problem breast implants. colorectal cancer, and some other
Working Group with two former presi- cancers.
dents of the American Society of Plastic Insurance coverage for implant removal
The National Center for Health
Surgeons, patient advocates, and the is somewhat complicated, but it is some-
Research scrutinized new research to
president of the nonprofit Breast Cancer times possible thanks to the Affordable
determine other potential causes of
Care Act, which prevents exclu-
weight gain.
sions due to pre-existing condi-
tions. Nevertheless, most insur- Obesity is caused by eating more
ance companies rarely consider calories than you burn up from physical
surgical removal “medically nec- activity, but some popular prescription
essary,” unless there is silicone medications drastically increase appetite
leakage, chronic pain, or cancer and obesity. Some of the drugs that are
cells caused by the implants. especially likely to cause obesity are
Many women have other implant “atypical antipsychotics,” which are
problems, such as leaking saline taken by more than 30 million
implants or autoimmune reac- Americans each year. These include
tions, which insurance compa- Seroquel, Risperdal, Zyprexa, and
nies do not consider sufficient Abilify.
8
“I appreciate you validating my concerns and offering me your expertise and insight...Thank
you so much! - Amanda G.
Can weight loss products make you Studies suggest a link between BPA rural areas or anywhere reception is
healthier? Most of these products help exposure and early puberty, infertility, poor; text instead of talking; do not keep
with weight loss at first, but many and prostate and breast cancer. We have your cell phone in your pocket, bra, or
people gain the weight back within a few been interviewed by reporters about our anywhere close to your body while it is
months or a year, so their health doesn’t concerns for pregnant women and turned on.
actually improve. We are urging the children, and testified about the risks
MRI Contrast Agent
FDA to require long-term studies so that before the FDA and legislators in Mary-
patients know whether these products land, Virginia, and Washington, D.C. Many patients undergo numerous MRIs
will improve their health. Thanks to these efforts, companies have with contrast, in an effort to determine
voluntarily stopped making baby bottles how best to treat their condition. MRIs
The risk of obesity may be increased by
and infant formula cans with BPA. can be life-saving; however, there is
exposure to BPA, phthalates, and other
growing evidence that the contrast
chemicals that influence hormones and Our efforts regarding BPA and
agents that contain gadolinium can
fat cells. Regardless of the cause of obe- phthalates are now focused on getting
accumulate in the patient’s brain or
sity, the evidence is now clear that it these dangerous chemicals removed
bones, causing serious health prob-
increases the chances of developing from the packages used for foods, in-
lems. In 2019, we completed a report on
several types of cancer. Learn more cluding canned foods and beverages and
gadolinium to warn patients and their
about these chemicals below. frozen meals, and from artificial turf and
physicians about these risks, and we
children’s playgrounds.
continue to educate patients about this.
Environmental Health Keeping Families Safe
Issues Sunscreen
Too many chemicals used in our homes
We continue to be a major voice
and communities can increase the risk One way to prevent skin cancer is to
fighting to ban dangerous
of serious diseases including cancer. We wear sunscreen, and we want to make
chemicals, especially those that
explain to families and policy-makers sure that sunscreens are safe and effec-
can cause obesity, cognitive
how research proves why the cancer- tive for you to use. We urged the FDA to
damage, asthma, and cancer. Our
causing chemicals in flame retardants study the active ingredients in sunscreen
current work to ban hormone-
used in drapes and furniture have risks to make sure they are safe. The effects of
disrupting chemicals such as
that are much higher than benefits – for different combinations of ingredients
phthalates and BPA builds on our
families and for firefighters. should also be researched, and we need
successful fight in Congress in
conclusive evidence that sunscreens are
2008 to get phthalates banned Unnecessary Radiation
safe for children, since this hasn’t been
from children’s toys and products.
Whether from cell phones, unnecessary studied.
Phthalates are hormone-disrupting CT scans, or mammography that is done
chemicals used to soften plastic, and too frequently, radiation can increase
have been linked to birth defects in baby the risk of cancer even as radiological
boys, including abnormal genitals, devices can contribute to easy communi-
testicular cancer, and liver problems. cation or better medical diagnosis. We
We have fought well-funded, repeated are fighting to reduce unnecessary radi-
efforts by industry to overturn the law ation exposure, especially for
since 2008, and are glad to report that vulnerable populations such as
those dangerous chemicals are still young children, adults at high
banned from children’s products. risk of cancer, and others.
BPA was originally developed as a syn- We know that most people are
thetic estrogen that was replaced by an not going to stop using cell
even more dangerous one (DES). BPA is phones, but you can lower your
currently used in hard plastic products exposure and your risks by lim-
and is commonly found in the lining of iting the length of your calls;
food and beverage cans. BPA leaches out using hands-free devices,
of the plastic and the CDC reports that it “speaker phone,” or holding the
is in the bodies of more than 93% of phone away from your ear; lim-
Americans. iting your cell phone use in
Congressional Testimony, Briefings, College Lectures, and Speeches 9
“I'd like to send my appreciation for the information you presented at the FDA Advisory Committee...I have been feeling
overwhelmed and disheartened about the lack of dialogue and transparency in the last year and a half, and am grateful
to you for acknowledging the importance of further investigation about benefits over risk/side effects, especially in that
forum.” -M.C.
Remember – We’re Always In 2020 and 2021, NCHR staff
Here for You! testified at more than three doz-
en FDA Advisory Committee
We assist individuals through our online
meetings about the safety and
and telephone helplines. In 2020, we
effectiveness of new medical
helped twice as many people as we did in
products being considered for
2014, and this number continues to
approval. A few examples of
grow. In some cases, we spend hours on
these testimonies include:
the phone talking to a patient or family
member, and hours more providing use-
January 2020: Dr. Nina Zeldes
ful information via email. In other cases,
testified about whether the ex-
we provided one or more email respons-
tended release opioid Aximris is
es to questions patients, family members,
likely to be abused. about the need for better safety
consumers, or health professionals have
standards.
about preventing or treating specific
January 2020: Dr. Nina Zeldes testi-
types of cancer or other diseases, or pro-
fied about the risks of combined Tra- November 2020: Dr. Diana Zucker-
vided free patient booklets or other ma-
madol and Celecoxib for acute pain man testified that evidence does not
terials that we had developed or adapted
relief. support the claim that Aducanumab
from the NIH or other credible websites.
(Aduhelm) is effective for treating
We provide policy makers, health February 2020: Dr. Diana Zucker- Alzheimer’s disease.
professionals, and other opinion leaders man testified about evidence that
with an unbiased explanation of talc in baby powder could be a car- December 2020: Dr. Diana Zucker-
scientific data so that they can make edu- cinogen. man testified about the need for bet-
cated decisions that affect everyone in ter research to determine whether
our nation. Our research and advocacy February 2020: Dr. Diana Zucker- the Pfizer COVID-19 vaccine is prov-
work represents the interests of ordinary man testified about the negative side en safe and effective for all ages and
women and families, who are often left effects and lack of benefit for races.
out of policy debates. We educate leaders Cyramza for metastatic lung cancer.
in our nation’s capital and across the December 2020: Dr. Diana Zucker-
country. July 2020: Dr. Meg Seymour testi- man testified about the need for
fied about inadequate research as better research to determine wheth-
The National Center for Health Re-
well as the risks of Belantamab er the Moderna COVID-19 vaccine is
search is one of the most active
Mafodotin for patients with relapsed proven safe and effective for all ages
organizations ensuring that FDA
or difficult-to-treat multiple and races.
helps patients by approving medi-
myeloma.
cal treatments that are proven safe
February 2021: Dr. Diana Zucker-
and effective. We also work with
August 2020: Dr. Meg Seymour tes- man testified about whether the
other federal agencies to ensure
tified about how the evidence did not Johnson & Johnson COVID-19 vac-
that essential research is conduct-
support the proposed use for Trelegy cine is proven as safe and effective as
ed and that toxic chemicals and
Ellipta for patients with chronic the company has claimed.
other products are removed from
obstructive pulmonary disease.
our homes and communities.
March 2021: Dr. Meg Seymour testi-
October 2020: Dr. Meg Seymour fied about the lack of evidence that
We do not accept funding from
testified against claims that Amphet- Tanezumab is safer or more effective
pharmaceutical companies, medical de-
amine Sulfate immediate release oral for osteoarthritis compared to over-
vice companies, chemical companies, or
capsules are “abuse deterrent.” the-counter pain medications.
other companies that make products that
affect our health, making us one of the
October 2020: Dr. Diana Zuckerman June 2021: Dr. Diana Zuckerman
very few unbiased voices speaking on
gave a presentation at an FDA Medi- testified about the need for higher
behalf of cancer prevention and treat-
cal Devices User Fee Act meeting standards for wrist bands and other
ment.
10
medical devices for nausea and ance for industry recommending
related health problems. that they include more older adults
in clinical trials for cancer treat-
ments
August 2021: Dr. Meg Seymour testi-
fied about the lack of evidence that December 2020: We provided rec-
TriGuard 3 is beneficial to patients ommendations to FDA regarding
and pointed out that is twice as likely the development of breast cancer
to cause strokes and death. treatments for premenopausal
women.
September 2021: Dr. Meg Seymour
February 2021: We provided recom-
testified about the need for better mendations to the Agency for
data for COVID vaccine boosters. Healthcare Research and Quality
(AHRQ) regarding their draft report
We also testified about environ- to Congress on improving patient
mental health issues to the EPA safety. We recommended that the
and National Academies of Scienc- report include warnings about
es, Engineering, and Mathematics potential risks caused by unproven
(NASEM): treatments.
March 2021: Dr. Diana Zuckerman
December 2020: Dr. Meg Seymour
wrote to the Belvedere California
testified about the risks of artificial
City Council to share information
turf at the plenary meeting for the
about the health risks of rubber play-
EPA's Children's Health Protection
ground surfaces.
Advisory Committee.
April 2021: We provided recommen-
April 2021: Dr. Meg Seymour testi- dations to AHRQ to improve their
fied regarding testing of the forever draft report about breast reconstruc-
chemicals called PFAS at a NASEM tion after mastectomy by including
meeting. more information about long-term
In addition to our testimonies, we pro- risks.
vided written recommendations to vari- July 2021: We initiated and wrote a
ous government agencies through 51 letter co-signed signed by other sci-
comments and letters between January entific non-profits and that we sent
2020 and August 2021. Some examples to HHS Inspector General,
include: CMS, and key members of Con-
January 2020: We provided recom- gress regarding the FDA’s unscien-
mendations to FDA about improv- tific and inappropriate approval of
ing post-market safety studies of Aduhelm for Alzheimer’s disease.
approved drugs and biological prod- August 2021: We provided recom-
ucts. mendations to FDA on notifying
March 2020: We wrote a letter to patients and healthcare profession-
the Maryland House of Repre- als about the materials used in medi-
sentatives in support of Maryland cal devices, to help reduce allergic
House Bill to Ban State Funds for reactions and similar problems.
Artificial Turf and Playgrounds. September 2021: We submitted rec-
April 2020: We provided recommen- ommendations to Medicare and
dations to FDA about the need to Medicaid in support of continued
improve healthcare providers’ funding of telehealth services for
understanding of opioids that are mental health.
labeled as “abuse deterrent” even
though they are addictive.
May 2020: We provided recommen-
dations to FDA regarding their guid-COMMUNITY OUTREACH AND EDUCATION 11
Internet and Social Media decade from children’s toys are allowed
Our websites, www.center4research.org in children’s artificial turf playing fields
and www.stopcancerfund.org, provide and playgrounds. But many of these fam-
free information on a wide range of top- ilies hit a bureaucratic brick wall when
ics important to anyone who wants to they tried to convince officials from
improve their health or increase their schools and city agencies to use safer,
chances of getting effective treatment. natural products.
We also reach a broad virtual audience
We were surprised at how difficult it was
through social media on our Facebook
to get these officials to listen to scientific
pages www.facebook.com/
evidence or even to common sense, and
nationalresearchcenter and
even more surprised to learn that fami- USA Patient Network
www.facebook.com/
lies were installing artificial turf in their
CancerPreventionandTreatmentFund;
yards as well! We’ve testified in Wash-
Twitter accounts: @NC4HR and We are proud that this work was enthusi-
ington, D.C., Maryland, New York, and
@cancer_fund; and Instagram accounts: astically appreciated by almost 200 jour-
Connecticut about the risks of artificial
@safe.to.play amd @comicrelief_nchr. nalists across the country, who used the
turf and playgrounds and we’ve contact-
We have thousands of Twitter and Face- information we provided as they dissemi-
ed officials in other states as well. Our
book followers. nated life-saving information via TV
goal is to stop the installation of these
news, newspaper and magazine articles,
Our online hotlines enable fields before children are permanently
websites, and other media.
anyone to obtain free information about harmed by frequent exposure to
their own health personal concerns by phthalates, volatile organic compounds,
Patient Training Work-
contacting info@center4research.org lead, and other toxic materials.
shops
info@stopcancerfund.org. We help hun-
Training Journalists to Companies that make medical products
dreds of individuals each year with their
Provide Accurate Medical financially support many patient organi-
questions regarding
Information zations, encouraging them to urge Con-
prevention and treatment options.
gress and the FDA to approve treatments
Community Meetings and The news media and social media are more quickly. However, those patient
Forums major sources of information regarding groups have rarely focused on safety is-
Parents who had read our articles health issues, whether it is the 24/7 news sues, or on other outcomes important to
about the dangers of artificial turf cycle on COVID or new research on can- patients.
playing fields and playgrounds cer, heart disease, pain management,
After hosting free workshops in 2015,
have asked for our help. We’ve pro- diabetes, or other serious health is-
2016, and 2017 to train patient advocates
vided free help to families across sues. With partial support from the Pa-
about research on the safety and effec-
the country. tient Centered Outcomes Research Insti-
tiveness of drugs and medical devices,
tute (PCORI), we hosted free workshops,
People were shocked when we told them the workshop participants formed the
teleconferences, and webinars for report-
that the same kinds of toxic chemicals USA Patient Network, which consists
ers in 2019-2021. The in-person work-
that have been banned for more than a of patients, caregivers, and their friends
shops and several teleconfer-
and family members that are united by a
ences and webinars were
common goal: to make sure that medi-
aimed at improving journal-
cal treatments are as safe and effective as
ists understanding of im-
possible. The USA Patient Network
portant new research results
includes patients concerned about cancer
on a wide range of health top-
and other serious diseases. Many of these
ics. As noted earlier in this
patient advocates have testified at public
report, nine of the teleconfer-
meetings with the FDA and other govern-
ences were focused on re-
ment agencies to improve the safety and
search information about the
effectiveness of medical products, and to
spread of COVID and possible
improve the safety information available
treatments and vaccines, as
to patients and their family members.
new research information
We continue to work with those patients
became available in 2020 and
and NCHR president Diana Zuckerman
2021.12
is an x-officio member of the USA Pa- mation that men need to know to make Public Service Announce-
tient Network Board. informed decisions about if and when ment with Actress
they should be screened for prostate can- Elisabeth Rohm
To find out more about the USA Pa-
cer. If they’ve already been screened for
tient Network, visit their website at
cancer, the booklet explains what it We were thrilled when Elisabeth Rohm
www.USAPatientNetwork.org.
means if their test showed they had pros- enthusiastically agreed to film a public
In Unity, there is Clout tate cancer. It is available on the Cancer service announcement for us in
2016. She’s been in TV shows such as
The National Center for Health Research Prevention and Treatment Fund website.
Law and Order, Hawaii Five-O, The
has a primary role in coordinating the
Surgery Choices for Women with Early Last Ship, Jane the Virgin, and in many
Patient, Consumer, and Public
Stage Breast Cancer. This 24-page book- films, including starring alongside Jen-
Health Coalition, which includes doz- nifer Lawrence in American Hustle and
let gives women the information they
ens of well-respected nonprofit organiza- Joy.
need when confronted with an early
tions, including:
stage breast cancer diagnosis. It is also She is particularly interested in our
American Medical Student Association, available on the Cancer Prevention and unique work to prevent cancer and to
American Medical Women’s Association, Treatment Fund website. keep cancer-causing chemicals out of
Annie Appleseed Project, ASHES childrens’ products as well as our neigh-
DCIS: What You Need to Know. This
(Advocating Safety in Healthcare borhoods, food, and homes. As a devoted
patient booklet explains DCIS in every-
E-Sisters), Association for Medical Eth- mother, she shares our concerns that her
day language and daughter might be exposed to these
ics (AME), Breast Cancer Action, Breast
enables women chemicals on playgrounds and in toys,
Cancer Consortium, Center for Medical
who have been soda cans, and even pizza.
Consumers, Connecticut Center for Pa-
diagnosed with it
tient Safety, Consumer Federation of You can find a link to this video at the
to make informed
America, Consumers Union, DES Action bottom of our homepage at
treatment deci-
USA, Government Accountability Pro- www.stopcancerfund.org, or visit
sions. To date, we www.stopcancerfund.org/in-the-news/
ject, Institute for Ethics and Emerging
have distributed press-releases/actress-elisabeth-rohm-
Technology, Jacob’s Institute of Wom-
more than 1,500 urges-give-back-join-fight-cancer.
en’s Health, MedShadow.org, MISSD,
free hard copies of
National Consumers League, National
this 32-page color
Women’s Health Network, Our Bodies
booklet to medical centers, physicians,
Ourselves, The Society for Patient Cen-
and individuals. It is also available for
tered Orthopedics, The TMJ Association,
free on the Cancer Prevention and Treat-
Union of Concerned Scientists, US PIRG,
ment Fund website.
Washington Advocates for Patient Safety
(WAPS), WomenHeart, and WoodyMat-
ters.
Through this coalition, we host numer-
ous coalition meetings, strategy sessions,
and nationwide efforts to help consum-
ers understand new health information.
Free Patient Booklets
We continued to distribute electronic
and hard copies of the following patient
booklets, which have been updated as
important new research results are made
available:
Prostate Cancer
Screening: What
You Need to
Know. This 10-
page booklet pro-
vides the infor-“I wanted to thank everyone for their help, kindness, and insights. I was able to develop various skills and explore different 13
interests, as well as understand and witness the numerous Public Health entities at play. I am truly grateful for my time spent
at NCHR” -(Fall 2020 intern)
Internships Washington correspondent for CNN, and
became a federal investigator for the US
Senate and the FDA, where he was a
special assistant to Commissioner David
A. Kessler. Their crusading effort to
regulate tobacco companies culminated
in a 2000 Supreme Court case and the
subsequent regulation of tobacco
products by the FDA. We are honored to
offer the Jack Mitchell Policy Internship,
which is generously supported by his
family, friends, and colleagues.
Alea Sabry and Edyth Dwyer, Summer 2021
The National Center for Health Research
was assisted by 17 impressive interns in Janice Bilden
2020 and 2021, including students from
Brown University, Cornell University, Janice Bilden Cancer
Duke University, Georgetown University, Prevention Intern
George Washington University, Konyang The Janice Bilden Cancer Prevention
University, UC Berkeley, University of Interns are responsible for writing and
updating web articles as well spreading
Miami, University of Michigan,
the word about cancer prevention on
University of Notre Dame, University of
social media. They also assist with
Texas Southwestern Medical Center, research and policy issues of importance Omega Logan Silva
University of Virginia, and University of to cancer prevention, including nutrition,
Wisconsin-Madison. exercise, other health habits, and Omega Logan Silva
Interns can focus on health avoiding dangerous exposures. Internship
communication or policy and gain a wide The Janice Bilden Cancer Prevention
It is with great sadness that we report the
range of experiences working with Internship is an annual internship that
passing of Dr. Omega Logan Silva, one of
Capitol Hill. Interns learn about the was started in 2018 thanks to a generous
our long-time Board members. Dr. Silva
Washington, D.C. policy scene while donation from Janice’s daughter, Holly
was professor emeritus of medicine at
helping to communicate with the public Bilden-Stehling.
the George Washington University in
about a range of health issues. The Washington, D.C. She was a long-
pandemic required us to switch to standing advocate for universal health
remote internships in 2020, but we were care and a committed supporter of
able to offer hybrid (remote + in-person) NCHR and of the advancement of
internships in the summer and fall of women in medicine. In 1963, she
2021. Interns gain experience writing returned to Howard University to train
and editing articles, reports, and press as a physician, earning her medical
releases, and using the internet to degree in 1967. She served as president
of the American Medical Women’s
influence people and policies. They also
Association, served on
develop their research skills and learn
6 different advisory groups for the NIH,
how to communicate effectively with
and received numerous awards as well as
patients and consumers. Jack Mitchell letters of commendation from President
Reagan and President Clinton.
Jack Mitchell Health The Omega Logan Silva internship is
Policy Internship generously supported by her friends and
We were devastated when our Director of
family, and focuses on women’s health
Health Policy, Jack Mitchell, died from
and training women in medicine.
non-Hodgkin’s lymphoma in December
2019. Jack started his career as a
muckraking journalist working for
columnist Jack Anderson, became a
Miriam Mosbacher, Nisa Hussain, and Hannah Kalvin
(when in-person hearings were still open to the public!)14
MEDIA AND COMMUNICATIONS
In 2020 and 2021, the media turned to the National Center for Health Research for timely, health and medical information
from a credible source. We responded to frequent requests from reporters and producers across the country for information,
comments, and interviews. The following is just a small sample of our coverage from 2020 and 2021. In addition, we publish
and distribute issues of our own printed newsletter, The Voice, and emailed monthly issues of our e-news Digests.
Public Health Experts
Want Rigorous FDA
Review of COVID vaccine
Politico
data August 7, 2020
How Fauci and the NIH Got Ahead of the FDA
and CDC in Backing Boosters
LA Times and CNN.com
September 16, 202115
NATIONAL BOARDS
Board of Directors National Advisory Board
Brandel France de Bravo, MPH
Author and Preventive Health Specialist The Honorable Rosa DeLauro
U.S. House of Representatives from Connecticut
Sarah Deutsch, J.D.
Former Vice President & Associate General Counsel, Mark Frankel, Ph.D.
Verizon Communications Former Director, Scientific Freedom, Responsibility
and Law Program, American Association for the
Advancement of Science
Daniel Fox, Ph.D.
President emeritus,
Patricia Hendel
Milbank Memorial Fund.
Past President of the National Association of
Commissions for Women
Benjamin Gitterman, M.D.
Associate Professor of Pediatrics and Public Health, Phyllis A. Katz, Ph.D.
George Washington University & Children’s National Director of the Institute for Research on Social
Medical Center Problems
Nancy Hardt, M.D. Rebecca Klemm, Ph.D.
Former Professor and Senior Associate Dean for President, Klemm Analysis Group
External Affairs,
University of Florida College of Medicine
Harriet Lerner, Ph.D.
Psychologist and Author
Judith L. Harris, J.D.
Partner,
Lisa Lopez, J.D.
Reed, Smith, Shaw, and McClay
Former Senior Vice President and General Counsel
for Haemonetics Corporation
Alan Mendelson, LLD
Founder & General Managing Partner,
Axion Venture Partners
Duchy Trachtenberg
Former Commissioner,
Montgomery County, MD
Susanne Wilke, Ph.D., MBA
Former CEO
Neurotrope Bioscience, Inc.
Susan F. Wood, Ph.D.
Research Professor,
George Washington University School of Public
Health and Health Services
Diana Zuckerman, Ph.D.
President
National Center for Health Research
We are very sad to report that two of our wonderful, long time board members passed away in 2020:
Mary G. Hager, M.A.
Freelance Writer
Omega Logan Silva, M.D.
Professor Emeritus,
George Washington University16
DONORS
- President’s Circle -
• Dianne and Rick Ammons • Judy Kovler
• Holly Bilden-Stehling • Lisa Lopez and Victor Del Vecchio
• Diana and Bill Conway • Alan Mendelson
• Sarah Deutsch • Patricia and Jerry Olson
• Benjamin Gitterman • Pam and Barry Zuckerman
• Judy Harris and Norm Ornstein • Jennifer Yttri
• Janet Holt
- Leadership Circle -
• Laura Apelbaum • Cindy Pearson
• Tom Beall • Tess Schulman
• Nan Booth and Richard Kogan • Ellie and Greg Shutak
• Rita Colwell • Bhuvaneswari Subramanian
• Wendy Dolin • Marcia Ward
• Brandel France De Bravo • Phyllis Wiesenfelder
• Nancy Hardt • John Wills
• Dr. Phil and Katheryn Hutcheson • Eleanor Wilson
• Rob Mostow • Kim WitczakYou can also read
