A View from the Hill (Capitol Hill)
Last month I flew to Washington, DC, to again take part in the "Hill Day" advocacy events organized annually by the American Society of Clinical Oncology (ASCO). I've lost count of how many times I've participated in this ASCO Advocacy Summit, but I've written about the experience a couple of times in this space, most recently in 2016.
That year, Hill Day brought about 60 ASCO members to Capitol Hill. This year’s event saw more than 170 members visiting the halls of several Senate and House office buildings. They came to find their representatives and to lobby them on issues important to both patients with cancer and their care providers.
For my part, I met with staff of both of Oregon’s senators and of two of our state’s representatives. I noticed quite a few other SWOG members also were lobbying their elected officials, including Anne Chiang, MD, PhD, our executive officer for breast and lung cancer research, and Carole Seigel, MBA, our patient advocate for pancreatic cancer and for palliative and end-of-life care.
It’s significant that ASCO encourages participation in this advocacy event from across the spectrum of professionals involved in cancer care and research. Each group has something unique to contribute to this effort.
Why have I done this year after year? Because face-to-face conversations are surprisingly effective, and because ASCO’s focus each year is on targeted issues that are vitally important to the work we do and, ultimately, to the well-being of people affected by cancer.
This year’s issues were certainly critical ones, urging our elected representatives to act
- to help end shortages of life-saving cancer drugs,
- to shore up the budget for federally funded cancer research, and
- to extend Medicare telehealth flexibilities due to expire soon.
Drug shortages have long been an issue, but over the past year the serious shortages of platinum-based cancer therapeutics have created a dire situation for patients whose very lives depend on them. These shortages have not only made it difficult or impossible at times to provide patients with the best care at the right time, the drugs in question are also the backbone of treatment on the control arms of many of our clinical trials. Shortages can slow or halt those trials, which hits us with the double whammy of not being able to provide patients the current best standard treatments and slowing the rate at which we can get them better treatments.
A number of bills that address one or more aspects of these shortages have been introduced in Congress, and some may have an impact, but comprehensive legislation is needed. ASCO is collecting signatures from across the spectrum of cancer care providers on an open letter urging Congress and the White House to take specific actions to address the conditions that can lead to such shortages. A regular refrain on this topic was that the U.S. can do better than this, and I have to say I agree. If you also agree, please visit the link above to weigh in.
Support for robust funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) is a perennial pitch at the ASCO Advocacy Summit, but last year’s expiration of dedicated Cancer Moonshot funding has meant a net budget decrease for both agencies, at a time when the incidence of cancer is rising.
A key talking point ASCO provided us on this topic should sound familiar: 40 years of NCTN trials have prolonged the lives of patients with cancer by at least 14.2 million life-years, at a per-life-year federal investment of only about $326. This analysis was, of course, led by SWOG biostatistician Joseph Unger, PhD, and it’s pretty convincing evidence for the claim that public funding for cancer research saves lives, and at a cost that’s hard to argue with.
Not to mention that many vital needs and questions in cancer research are tackled only by public-powered research organizations such as SWOG and the other NCI National Clinical Trials Network (NCTN) groups.
Telemedicine (telehealth) flexibilities implemented during the COVID-19 Public Health Emergency proved to be something of a silver lining to pandemic-era restrictions on social interactions. We worked hard to incorporate them into our clinical trials, and it quickly became clear that, when thoughtfully implemented and monitored, these flexibilities could bring significant benefits to patients and providers, lowering the treatment burden, cost, and disruption of participating in a clinical trial – all without reducing the quality of patient care or the validity of data collected for clinical trials.
Extending these benefits into the post-COVID era was on the ASCO Advocacy Summit menu in 2021 and 2022, and we achieved some success. But certain telehealth access provisions for patients who use Medicare are set to expire at the end of 2024, so there’s a need for additional (final?) Congressional action. The CONNECT for Health Act would permanently extend these telehealth flexibilities for those on Medicare. If it’s enacted. This was the pitch 170+ of us delivered on Capitol Hill.
You can learn more about all of these issues, and about steps you can take to encourage your own legislators to support them, in this report on the 2024 ASCO Advocacy Summit.
You can also look into your own state’s oncology society as a venue for advocating for issues important to cancer research and patient care. In fact, I’m headed to Bend, Oregon, this weekend to attend the Oregon Society of Medical Oncology’s membership meeting.
What else will you do?
It’s annual advocacy event behind it, ASCO opens its 2024 annual meeting at the end of this month. I’m thrilled to be able to tell you that meeting will feature 30 abstracts on work led or co-led by SWOG, seven of which will be delivered as oral presentations. These are record numbers for us! ASCO will post meeting abstracts to its website on May 23rd, and I plan to have lots to say about SWOG’s ASCO results in my Front Line post on May 24th, but I couldn’t resist forecasting some of the good news here and now.