Jamie Bearse is the CEO of ZERO — The End of Prostate Cancer, a prostate cancer nonprofit organization that advances research, encourages action, and provides education and support to men and their families through patient-centric programs.
Prostatepedia spoke with him about the changes President-elect Donald Trump’s administration may bring to prostate cancer.
What does a Trump Presidency mean for prostate cancer research?
Mr. Bearse: There are two different sources of government funding for prostate cancer research: the National Institute of Health (NIH) and the Prostate Cancer Research Program (PCRP) within the Department of Defense (DoD).
Until we have more information about who the Directors of the National Institutes of Health (NIH) and National Cancer Institute (NCI) will be, how the Trump administration will address cancer research, and how they prioritize cancer research against the country’s other needs, the future of research funding at NCI is uncertain.
The DoD also plays a very significant role in the war on cancer. Within the DoD is a program called the Congressionally Directed Medical Research Programs (CDMRP) that has about two dozen cancer research programs. One of those programs is a prostate cancer program, to which Congress appropriates $80 million.
It focuses on taking new, bright ideas from the scientific bench to the patient’s bedside as rapidly as possible.
It has been a very successful research model that incorporates patient feedback. Peer-reviews by gold-star institutions around the country decide who gets grant funding.
There have been three new treatments for advanced prostate cancer in the last five years as a result of DoD prostate cancer funding: Xgeva®, Xtandi®, and Zytiga®. The PCRP at the DoD has funded clinical trial research finalizing all three of these agents.
The Presidential administration has historically not given much philosophical input into medical research funded by DoD because Congress appropriates the program’s funding.
Control of neither the Senate nor the House of Representatives has changed after the election. In fact, all of the big champions for prostate cancer research funding at the DoD remain in Congress in positions of influence. I’m very hopeful that we are in good shape for prostate cancer research funding at the DoD.
But there is always a risk, predominantly because Senator John McCain, who was reelected, is an opponent of the CDMRP. McCain is not necessarily against cancer research, but he does not believe that medical research funding belongs in the DoD and has continually tried to eliminate the program through legislation. He also continues to fall short on offering a solution; he just wants to eliminate the program without proposing a vehicle to continue this high-risk, high-reward research in another Federal agency. How many people will support the bills he introduces is a bit of an unknown, but I’m fairly confident that the bills will not pass.
What should patients do if they’re concerned?
Mr. Bearse: Every year, we host our ZERO Prostate Cancer Summit in Washington, DC, during which we teach advocates from around the country to be the best advocate they can. We bring patient advocates to Capitol Hill to meet with their elected officials in an attempt to recruit these officials as champions for prostate cancer research. Joining us for that summit is one way to get involved.
Anybody can apply to the Summit. We have very limited scholarship funding to encourage advocates from particular districts to attend, but the Summit itself is open to everyone.
Another way to get involved is to sign up for our advocacy alerts, so that you will get an email when issues related to prostate cancer emerge.
We also do a Call To Action for constituents to call and write to their elected officials about issues that come up.
How will the proposed modifications to the Affordable Care Act affect prostate cancer patients?
Mr. Bearse: That is uncertain.
During the campaign, we heard a lot about how Trump’s administration would repeal and replace the Affordable Care Act. But in the last few days, there has been some signaling that there is interest in keeping at least a couple parts of the Affordable Care Act that seem to be popular around the country — covering preexisting conditions and allowing children up to the age of 26 to remain under their parents’ health insurance.
Those two provisions of the Affordable Care Act are tied into the overall funding mechanism. How will we keep those two provisions while changing the rest of the Affordable Care Act?
Today, what changes to the Affordable Care Act mean for prostate cancer is uncertain. That is subject to change moving forward.
What can patients do if they’re nervous about their own care?
Mr. Bearse: If you’re unsure about what all this means for your own battle with prostate cancer, you may want to use ZERO’s patient navigation program, ZERO360. ZERO360 pairs you with a navigator who will stay with you throughout your fight with cancer. This is not a one-and-done phone call. You will be assigned to a navigator who will help answer all of your questions on a rolling basis.
As the Affordable Care Act potentially changes or does not, as your health insurance potentially changes or does not, we will help direct you in the best possible way.
Is this a fee-based service?
Mr. Bearse: It is absolutely free and confidential.
Are there any other implications for prostate cancer during the transition?
Mr. Bearse: Many prostate cancer patients and advocates are very interested in early detection for prostate cancer. There is a volunteer task force called the United States Preventative Services Task Force (USPSTF) that states that the prostate cancer PSA test doesn’t have any value in saving lives. We disagree.
We believe that PSA testing is the first step in identifying who has prostate cancer and who does not. There are other steps that help us determine how widespread and aggressive a man’s prostate cancer may be before a he jumps into treatment.
The USPSTF argues screening men automatically leads to over-treating men. We disagree.
The USPSTF greatly influences general practitioners. A man will go in to see his doctor for an annual physical expecting the doctor to give him all the tests he needs to make sure that he is healthy. But more times than not, the general practitioner will cite the USPSTF’s stance that prostate cancer screening has no value unless you are in a high-risk group like being African American or have a family history of the disease. We believe that is a problem.
But the election may have a positive impact on current screening recommendations.
The Affordable Care Act (Obamacare) ties the USPSTF’s recommendations to mandatory commercial insurance coverage. If Congress reforms or repeals and replaces Obamacare, there could be an impact on the force of the USPSTF’s recommendations and in turn how the USPSTF influences general practitioners’ behaviors or recommendation in for prostate cancer testing.
This could be positive development for the prostate cancer cause. If the USPSTF’s recommendations are no longer tied to insurance coverage general practitioners may start to look to the National Comprehensive Cancer Network (NCCN) guidelines for prostate cancer screening, which we believe are more favorable.
We have two indications that this may happen.
First, there is a bill on Capitol Hill called the USPSTF Transparency and Accountability Act that, if enacted, would require the USPSTF to incorporate a broader spectrum of expertise into its cancer screening recommendations. Congresswoman Marsha Blackburn, a sponsor of the bill, is part of the current Trump transition team, so her thoughts and feelings about the USPSTF may be translated into the Trump administration.
Another champion for stating that the USPSTF prostate cancer screening recommendations are overblown is Alabama Senator Jeff Sessions, who currently continues to be vetted for a potential cabinet post. He may likewise influence thought on how the USPSTF behaves or influence the Trump administration’s reactions to cancer screening.