Healthcare and healthcare insurance are critically important to each of us, so I've been writing community education articles to help laymen understand the implications of the "debate" that's underway at the national level.
The third chapter of my healthcare information series, discussing different types of healthcare insurance options, is available at
The last chapter, Part Four, deals with a comparison of single-payer vs. private insurance and highlights the potential economic implications of that choice, as it's being considered in different states right now:
I hope these are useful to my readers.
The second part of my community education series about the highly politicized healthcare debate (more like a fight now that we're on the second round of bad bills) is now available on Huffington Post. It addresses the protections built into the ACA that are at risk. This bill is dangerous for anyone who does or will face cancer, and we must band together to stop it.
Please contact your members of Congress to ask them to vote NO on the new AHCA bill if and when it comes up for a vote. Giving states the right to deny coverage for pre-existing conditions or to allow insurance companies to raise premiums for the millions of people with pre-existing conditions could put insurance coverage out of reach for cancer patients. We must stand with and protect each other. The link is at http://www.huffingtonpost.com/entry/59011258e4b00acb75f18465.
Today I published on Huffington Post the first of a series of articles about the current healthcare debate, trying to educate the public about what it's really about. I had the support of a number of healthcare professionals who are part of a healthcare issues community activism team. I'm hoping it will help you understand the issues behind the nationwide debate and to bring them home to their impacts for you.
Just as we all thought we were making significant progress in advancing cancer research and improving the odds of survival for thousands of patients, the Federal Budget "outline" is threatening to take $5.8 billion out of the research budget of the National Institutes of Health. The impact of the potential cuts is described in a March 16 press release from the American Association for Cancer Research:
PHILADELPHIA - On behalf of the entire cancer research community, the American Association for Cancer Research (AACR) was shocked to learn that the Trump administration is proposing to cut $5.8 billion from the National Institutes of Health (NIH) budget in fiscal year (FY) 2018. At a time when extraordinary progress is being made against cancer and many other diseases, these draconian cuts would set research back for decades and also threaten the careers of an entire generation of young investigators working in labs and clinics all over the country who are committed to improving public health and saving lives.
Therefore, we call on members of Congress to stand firmly against this budget proposal. We urge them to maintain the momentum they initiated in FY 2016 when they provided the NIH with a $2 billion funding increase so as to ensure that medical research remains a national priority. Providing robust, sustained, and predictable annual funding increases for the NIH is absolutely required for the benefit of cancer patients nationwide. Since today’s budget proposal by the Trump administration will severely jeopardize the progress we are making in preventing, treating, and curing cancer, the proposal must be stopped in its tracks.
My latest Hufington Post blogpost adresses the differences among standard, alternative, and complementary therapies. It's important to understand that fear of cancer treatment's nasty side effects may steer a patient stray, into "alternatives" that don't help manage the disease in a productive way. If you're considering alternatives to traditional medicinal treatments, you might want to take a look so you can weigh the potential risks with the potential gains.
A news report in STAT in December 2016 shared some shocking but important news: That some cancers have begun to metastasize--that is, to shed cells that go to other body parts--even before the primary tumor is detectable. The report stems from studies that have been underway since 2008 to explore the molecular mechanisms that spur tumor growth and cancer cell proliferation. According to the article, this is most common in breast, melanoma, and pancreatic and pancreatic cancerss. They call into question the "non-invasive" diagnosis that many of us receive through early detection and may hgihlight the need for more basic research into the ways in which cancer cells grow, proliferate, and spread through the body. In this article, several prestigious experts praise the research done to date, but the implications are as yet unclear.
I've just had an Op Ed piece published in a number of Gatehouse Media community newspapers to help educate the public about the patient protections that are at risk if the Affordable Care Act is repealed without thorough deliberation about the impact repeal will have on people with cancer and other serious conditions. For those living on limited incomes, tax credits and health savings accounts will make it more difficult to obtain aequate health insurance. In addition, high risk pools will make insurance more expensive for anyone with a pre-existing condition (nearly half of the population).
I couldn't cover all of the concerns associated with repeal in my Op Ed, but you'll see the patient protection ones in the link provided above. If you're concerned to preserve patient protedtions or have a perosnal sotry about how the Affordable Care Act has affected you or your family, please use these phone lists to contact your Senators or members of Congress. The aides who answer the phone will log in your name, your city or town, and your position on the issue. Remember, there is power in numbers, and your story is as important as anyone else's.
Even though dramatic progress is being made in understanding and fighting cancer in North America, cancer remains a scourge worldwide, especially in less developed and poorer countries. The Cancer Knowledge Network, based in Canada, is a very useful resource on such topics, especially for cancer in kids and young adults.
I was invited to contribute articles for World Cancer Day, February 4. Those four articles provide insights about efforts to scope and locate the cancer problem, scientific developments to solve it, resources and support needed by the scientific community, and what the public needs to know about cancer.
If you're interested in learning more about global cancer, these articles provide insights about the strong best practices sharing that's going on across national borders.
An ACS Cancer Action Network press release reads as follows (direct quote):
WASHINGTON, DC – January 19, 2017 – Today, the Food and Drug Administration (FDA) issued a proposed rule to limit N-nitrosonornicotine (NNN), a known carcinogen, in smokeless tobacco products. This is the first time FDA has used its authority to require a standard for tobacco products. Under this authority, the FDA can require changes to tobacco products, such as removal of harmful ingredients, elimination of flavors, or reduction of nicotine levels, in order to protect public health.
A statement from Chris Hansen, president of the American Cancer Society Cancer Action Network (ACS CAN), follows:
“We applaud the FDA for taking the first necessary step to limit a cancer-causing agent found in smokeless tobacco products.
“The dangers of smokeless tobacco are severe. Smokeless tobacco use is responsible for an estimated 1,600 new cases of oral cancer, 200 cases of esophageal cancer and 500 cases of pancreatic cancer in the U.S. each year. In addition to cancer, smokeless tobacco users have an increased risk of death from heart disease and stroke.
“ACS CAN strongly supports the FDA’s implementation of this rule, which over a 20-year period would prevent nearly 13,000 new oral cancer diagnoses and prevent 2,220 oral cancer deaths.
“We encourage the FDA to take the necessary actions to finalize this rule and protect the public’s health from the dangers of tobacco.”
Advocacy on this issue has helped move the ball forward. You can join the Cancer Action Network and get your voice heard at www.acscan.org.
StatNews reports this morning that the FDA Oncology Center of Excellence, a major initiative othe Cancer Moonshot initiative, has just been launched. It creates a clinical review system for drugs, biologics, and medical devices to accelerate bringing safe and effective products into cancer care more quickly. This offers promise for the longer term.
An interesting article in Statnews today highlights the challenge facing both physicians and cancer patients in learning about available experimental treatments. At the same time that patients are dying before finding an appropriate experimental treatment, many clinical trials are cancelled because they couldn't recruit enough patients that qualified. In part, it's because so few people apply, and in part it's because they don't learn enough about the qualifications and potential benefits in time to apply.
If you're facing such a dilemma, you might want to read this story.
This morning, the National Cancer Institute announced an agreement between NCI and six drug companies (more in negotiations to be added) to create an NCI Formulary that will help accelerate getting new cancer treatments from investigators' labs into clinical trials more quickly. The goal is for NCI to serve as an intermediary to make it faster to explore combination therapies, which are currently getting a lot of attention as potential new directions for treatment. Negotiations are underway right now regarding 15 therapeutic agents from these six companies and with many more companies to add many more agents to the Formulary. At a time when advocates have been pressing for more Federal funding for cancer research, this initiative (an offshoot of the Cancer Moonshot) is promising. The particular focus is on investigator-initiated studies, which often lack sufficient financial support to prove the merits of new treatments and understanding of new cancer signalling pathways. As the Formulary proves itself, it will become easier to gain the participation of more pharmaceutical companies and to move more combination therapies through the research pipeline.
Signs of hope.
My most recent Huffington Post article helps reveal how leading researchers are learning from Mice about chemo resistance and cancer's microenvironment. It offers promise for more effective personalized treatments. I found it fascinating to tour Dr. Dan Duda's lab at the Steele Laboratories at Mass General Hospital. You too might find it fascinating to read of their work.
The American Association for Cancer Research (AACR) has just released its first set of data from AACR Project Genomics Evidence Neoplasia Information Exchange (GENIE), including de-identified genomic and clinical data from the medical records of over 19,000 patients and 59 cancer types. The data, which maintain patients' personal confidentiality, were drawn from eight major participating cancer centers worldwide. The data will be available to researchers and clinicians to help them discern correlations between genomic information and clinical activities and outcomes. This project reflects the growing trend of using "big data" analysis capabilities (the ability to digest and draw practical meaning and action implications from massive volumes of data) to help in diagnosis and treatment decisions for individual patients.
Within the cancer research and clinical communities, numerous similar data bank initiatives are underway. As such initiatives continue to grow, they offer promise to accelerate both research discovery and personalized medicine for improved clinical outcomes.
Use of e-cigarettes by children, adolescents, and young adults has risen at a "staggering" rate since 2010, when it was rare. This has driven the nation's Surgeon General to declare a public health emergency and to call for both increased FDA regulation and increased legislative action at state and local levels to include e-cigarette and other nicotine products ini tobacco control laws and programs. Public advocacy may be needed as regulatory modifications are proposed for legislative action. Each of us can speak out to help prevent this predictable public health crisis.
If you're concerned to learn more, check out the article in MedPage Today.
A study released at the Radiological Society of North America (RSNA) 2016 Annual Meeting on November 28, 2016, reports that despite past recommendations by the US Preventive Services Task Force (USPSTF) that women undergo screening every 2 years only until age 74, analysis of mammography results in older women demonstrate conclusively the benefits of continuing screening as long as women have a life expectancy of at least 5-7 years and are willing to take appropriate action based on the test's results. The study was described in written up in the Medscape medical newsletter on Decemer 1, 2016.
A New York Times article was published on November 28 about students at Fred Hutchinson Cancer Center in Seattle discovering a new way of diagnosing CML with a spot of blood on a piece of special paper. It's a fascinating tribute to the creativity of young investigators who are inspired by the lack of limits on what can be done to solve a scientific problem with a little ingenuity. Fascinating reading, and another inspirational tidbit for investing in the research work of young investigators. To do more of that, donate to the research programs of the American Cancer Society at www.cancer.org. Together we can save lives and create jobs.
Just posted on Huffington Post is my article on why increasing Federal cancer research funding should be an important priority on the President-Elect's leadership agenda. Take a look, and if you like it, please click "like" and share it on your social media feeds. We can make this a priority if enough of us speak out.
Just posted on Huffington Post is my article on cancer caregiving. May we all learn from each others' experiences.
Despite the number of states that have passed legislation to restrict indoor smoking, the proportion of cancers caused by smoking and second-hand smoke is still stunning. According to the Journal of the AMA (JAMA), quoted in the New York Times on November 1:
Researchers calculated the number using the relative risks for 12 smoking-related cancers, including acute myeloid leukemia, mouth cancers, and those of the esophagus, stomach and colon.
Smoking is involved in 22.9 percent of cancer deaths in women and 33.7 percent in men. In all, the authors estimate that 167,133 people died of cancers associated with smoking cigarettes in 2014. (This number does not include deaths from many other diseases linked to smoking.)"
So far, over 8 million lives have been saved by these laws, but clearly more work is needed to control tobacco use in ways that will save more lives.
It's up to each of us to make it clear to all political candidates that cancer issues influence our decisions when we cast our votes in November.
Every four years, the American Cancer Society's Cancer Action Network asks each presidential candidate about their positions on government support for cancer early detection and research programs. If you want to know where the presidential candidates stand these issues, go to http://www.cancervotes.org/guides/national/president. Cancer has been under the radar in the campaigns, so hopefully this nonpartisan survey will provide some new information about where the candidates stand on issues like funding for the Moonshot and for cancer research that m eans so much to many of us.
The Food and Drug Administration (FDA) has just announced that it has awarded $23 million for 21 grants that will mobilize clinical trials to accelerate treatments for rare diseases, working through the Orphan Products Clinical Trials Grants Program. The program funded 31% of the proposals it received. Its focus was consistent with the National Cancer Moon shot initiative in its intent to accelerate research progress.
"24 percent of the new grant awards fund studies enrolling patients with cancer; 40 percent of these [cancer] studies target devastating forms of brain cancer, one of which recruits children with recurrent or progressive malignant brain tumors. 43 percent of this year’s awards fund studies that enroll pediatric patients as young as newborns. Of these, two focus on research in transplantation and related issues."
These studies range over time periods of 1-4 years and range in type from Phase 1 to Phase 3 clinical trials. For those who have been confronted by rare or pediatric cancers, these studies may offer new potential therapies.
"Compassionate Use" is a term that refers to the process for gaining access to investigational drugs that are not yet FDA-approved for full-scale marketing. They may still be in clinical trials or awaiting approval.
A recent survey of 100 pharmaceutical companies identified that only 19% post their compassionate use policies (that is, ways for patients to gain access to experimental drugs). Further information about compassionate use is covered in a STAT article published on October 13. The 21st Century Cures Act which is still awaiting release from both House and Senate committees, includes some provisions to increase transparency around these policies.
Meanwhile, the Cancer Knowledge Network (CKN), an affiliate of Current Oncology magazine, is an electronic information-sharing network based in Canada but addressing North American cancer issues and resources. A recent CKN post, entitled "A Primer on Compassionate Use," addresses how to work with your physician to gain access to such therapies if standard treatments are not working and your oncologist believes you would be a good candidate for such a drug. This is a very solid information source, and the post is worthy of your attention if you or someone you love needs such access.
Who would have guessed that you could advance the effort to solve the dilemmas of metastatic breast cancer by just spitting into a test tube? Well, a new initiative is well on its way that is signing up participants through social media.
When breast cancer metastasizes, it often moves to the liver, lungs, bones, and brain. Other patients who believed that a mastectomy and chemotherapy had beaten their diseases at an early stage may be faced with a recurrence many years later (like my friend, whose lobular breast cancer surprisingly re-appeared in her appendix 28 years after her initial mastectomy and chemo treatment).
While many scientists are researching the metastatic process in an effort to understand genetic mechanisms for cancer's spread that might be interrupted, too many lives are still being lost. Around 30% of breast cancer patients develop metastatic disease and have an average life expectancy of 3 years. (One friend has fought it for over 13 years, with indescribable suffering and family impact.)
The Metastatic Breast Cancer Project, run by scientists at Harvard and Dana-Farber Cancer Institute and the Massachusetts Institute of Technology’s Broad Institute, is focused on metastatic breast cancer. Funded through crowd-sourcing, has enrolled more than 2,600 patients so far since launching last October. That rate of enrollment is said to be unprecedented.
Most breast cancer patients are treated at centers that don’t do research on tumors, so participating in studies at academic medical centers far from home is cumbersome at best. For patients sick or dying from their disease, the hurdles and expense of such travel can be insurmountable.
This project is different. Patients sign up online, mail in saliva kits for genetic testing, and allow use of their tumor tissue samples and medical records. Researchers use social media to keep them posted about progress, and periodically invite participants to visit the Cambridge, Mass., lab where their specimens are being analyzed.
Another way this project is different is that so many women are treated for breast cancer at centers that are not research institutions and so lack the ability to analyze the genetic composition of breast tissue. This project lets the participant literally spit saliva into a test tube and mail it to the lab, for study. The assortment of patients isn't fully representative of the community of those fighting metastatic breast cancer, largely because it centers on social media that would appeal to the younger audience. Nevertheless, it's yet another tool for helping to solve an important problem that affects women year round and deserves special focus in October.