Dear Catherine,
It’s hard to believe spring is almost upon us. The past few months have flown by and the pace of policy changes have been just as rapid. Attempts to alter our health care system continue. While full scale efforts to repeal the Affordable Care Act (ACA/Obamacare) were not successful in 2017, there has been a pivot towards seemingly smaller changes (within our regulatory system or at the state level) that could seriously impact patients. Make sure to read our comment letter on Association Health Plans and our blog on short-term, limited duration plans—which we believe may not offer coverage sufficient for people living with (or at risk of) chronic illness and could put patients at significant financial risk.
You may have also heard about “compassionate use” or “right to try” in the news lately. As federal legislation is debated regarding the ability of terminally ill patients to access treatments that have not yet been approved by the U.S. Food and Drug Administration, CSC released principles that guide our approach to this issue. Balancing patient self-determination with patient safety, we are dedicated to ensuring that all patients have access to high quality, appropriate, comprehensive, and affordable care that is right for them.
We appreciate your passion and partnership, and hope you find this month’s newsletter helpful in your continued advocacy with, and on behalf of, patients, survivors, and caregivers.
Dr. Jill Biden Hears from CSC Caregiver
Over the weekend, you might have seen the hashtag #cancerFIERCE coming out of the social media coverage of South by Southwest (SXSW).That is because Dr. Jill Biden and other leaders with the Biden Cancer Initiative were at the gathering in Austin, TX to put the organization’s work front and center at a gathering of leading thinkers and entrepreneurs. As part of Dr. Biden’s #cancerFIERCE visit to SXSW, she met with cancer patients, caregivers, and advocates, including Mike DiMascio.
Advocate Spotlight: Miranda Johnson, Washington, D.C.
"Having a personal connection to an issue is part of what will make the work that you do resonate with so many people. It will drive your passion to do more research, learn about the issue, and look for ways in which you can contribute and help people."
Read more from Miranda about discovering the importance of being an advocate and sharing your story.
The Cancer Support Community’s Helpline is staffed by professional counselors and oncology resource specialists who are experienced in helping people with cancer and their caregivers. The counselors provide emotional support as well as information about living with cancer and referrals to local, regional, and national resources. Our counselors and resource specialists can be reached by phone or live chat from Monday through Friday, 9 a.m. to 9 p.m. Eastern Time. All of our services are available in English and Spanish. Contact us today! You don’t have to face cancer alone.
Patient Access to
Unapproved Therapies
You may have heard about the Right to Try bill that was voted on in Congress this week that is intended to increase access to therapies that have not yet been approved by the FDA (and therefore have not been proven to be safe and effective). CSC believes that patients should have access to therapies that have been proven to be safe and effective, as well as opportunities to gain access to investigational therapies through expanded access or “compassionate use” pathways should they wish to do so. The CPI’s Patient Access to Unapproved Therapies Guiding Principles outlines our positions for when and how patients should have access to unapproved therapies.
For breaking updates on health policy news and opportunities to engage, follow us on Twitter! Click on the Twitter icon or find us @CSCCancerPolicy
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