Advocating on Your Behalf

By Mila Becker, JD, Chief Policy Officer

That old saying about similarities between legislating and sausage making rings truer today than ever, including when it comes to health care policy. With a sharply divided congress, making progress on important health issues can be messy, challenging, and something you might not want to look at too closely. 

But here at the Endocrine Society, we’re undaunted. 

We come to work each day with a sense of optimism and passion that our efforts ultimately will make a positive difference in the lives of our members, the patients they serve, and the science they research.

I’m proud to say our advocacy work over 2021 has resulted in significant victories, including on Medicare physician payments, insulin pricing, and research funding. With your help, we have advanced key policy goals and raised awareness of the value of endocrinology and endocrine research on Capitol Hill. 

I’d like to share a few of our accomplishments from this past year:

Averting Medicare Physician Payment Cuts 

Without congressional action, endocrinologists in the U.S. faced a nearly 10% cut in Medicare physician payments beginning January 1, 2022. During the last several months, the Society met with the Centers for Medicare and Medicaid Services (CMS), met with congressional offices, shared information with congressional leaders, used social media to call attention to this issue, and launched an online advocacy campaign in which our member physicians could share their concerns with their congressional delegations. 

Our efforts paid off in early December when Congress passed legislation to avert the scheduled cuts. As a result, the 9.75% cut endocrinologists would have felt January 1 will now be less than 1% until July and then, unless further congressional action is taken, would increase to 2.75% and then increase further on top of that in 2023.  

We will continue to work with Congress to achieve long-term reforms in Medicare payment so that physicians in general and endocrinologists specifically will not have to fight these payment battles annually. With member engagement in our advocacy, we are confident that we can make long-term changes to benefit endocrinologists.

Drug Pricing and Lowering Costs of Insulin 

Perhaps no other issue has galvanized politicians on both sides of the aisle as much as the high costs of medications. Unfortunately, legislative and regulatory efforts to date have shown only modest results, and U.S. consumers continue to pay far more for pharmaceuticals than citizens of most other nations. 

While we care about high drug costs broadly, the Society has long urged Congress to pass legislation focused on the costs of insulin. In fact, we maintain that insulin, which has increased in price by more than 10 percent annually over the past decade, is the “poster child” for needing to address drug costs.

Insulin pricing has been a key issue for us over the past 12 months.

In January we urged The Biden Administration to include insulin affordability provisions in its massive social spending proposal known as Build Back Better. We then met with members of Congress, including the bipartisan Diabetes Caucus, to urge adoption of our recommendations in the actual legislation. 

The insulin affordability message was reinforced by Society members during our Clinical Hill Day event in July. Even more members reached out to their lawmakers to press the issue as part of our grassroots online advocacy campaign this past fall. Never resting, we led an effort with other provider groups in September to call on congressional leadership to address insulin pricing immediately. We shared stories from across the country about how a lack of access to affordable insulin can harm individuals and families. 

And as recently as November 19, we held a congressional briefing featuring experts from around the country to make our case about the need for insulin affordability. 

The result? We were delighted to see Administration adopt our recommendations and the House recently pass its Build Back Better Act with a drug pricing provision that specifically calls out insulin. This legislation would: 

• Cap insulin co-pays at $35 per month for Medicare beneficiaries.
• Institute an inflation cap to ensure the price of insulin does not increase faster than inflation.
• Give government authority to negotiate insulin prices and other high-cost prescription medications under Medicare. Negotiated prices would take effect in 2025, which the Congressional Budget Office projected would save $78.8 billion between 2022 and 2031.

These represent our core recommendations. The bill is now before the Senate, where it remains under negotiation. Needless-to-say, we are urging the upper chamber to keep these pricing provisions intact. To this end, we recently launched an online advocacy campaign for our U.S. members to reinforce this important message with their Senators.

A vote on the Senate version of the Build Back Better Act could come any day now! Stay tuned!

Increased Funding for National Institutes of Health

As everyone knows, insulin was discovered 100 years ago. What’s the next great discovery in our field? 

We need to continually invest in research to make progress and medical breakthroughs. That’s why we’re happy to report our advocacy efforts helped ensure increases of more than $2 billion for the National Institutes of Health (NIH).

This figure was included in both the House and Senate versions of a fiscal year 2022 funding legislation. 

Given the sausage making on Capitol Hill, however, both chambers in December approved a stopgap continuing resolution to keep the federal government open through February 18, a measure that doesn't include the increase. We will continue to urge Congress to pass a final appropriations bill that includes increased funding for NIH. Again, stay tuned!

Other Important Wins

Medicare physician payments, insulin pricing and research funding account for just some of our many activities. Among our other important milestones in 2021:

• We joined LGBTQ+ youth and reproductive health organizations to intervene in a UK transgender case, Bell v. Tavistock. We provided the UK Court of Appeal with information on standard of transgender healthcare, our clinical practice guidelines, and consent of minors. The Court ruled in our favor, allowing minors with gender dysphoria/incongruence to provide consent to puberty delaying medication.
• We worked with Senators Joe Manchin (D-WV), Kevin Cramer (R-ND), and Jeanne Shaheen (D-NH) to urge the Senate Appropriations Committee to include language in its FY 2022 appropriations bill encouraging the Department of Health and Human Services (HHS) to review data collected on audio-only services to expand access to healthcare for patients in rural and underserved communities. The final Senate Appropriations Bill included our audio-only report language.
• We were selected for a high-level roundtable of the European Union’s chemicals strategy for sustainability. Our objective was to ensure that revisions to legislation as part of implementation of the chemical strategy reflected the latest science on endocrine-disrupting chemicals (EDCs).
• We shared concerns and recommendations at an NIH listening session and with Congress on a proposed new federal agency, the Advanced Research Projects Agency – Health (ARPA-H). We want to ensure that ARPA-H funds unique projects and does not compete with NIH for funds. Our feedback was reflected in legislative language put forward by Rep. Anna Eshoo (D-CA), as well as the NIH summary report of the listening sessions.
• We conducted a virtual briefing with the Society for Women’s Health Research to discuss the importance of including sex as a biological variable (SABV) in research. We provided an update on the NIH 2016 SABV policy and how the field has changed in the past five years, as well as offered recommendations for overcoming barriers to the inclusion of SABV in research.
• We worked with the newly formed House Caucus on Social Determinants of Health to discuss ways Congress can help close disparity gaps. We continue to keep caucus members informed about our work and meet with them to find ways Congress can address this important issue.
• We issued recommendations to the UN Special Rapporteur on toxics and human rights, and the NIH on development of new diversity, equity, and inclusion (DEI) initiatives. Our priorities are to ensure that policymakers are aware of the disproportionate effects of EDCs on marginalized or disadvantaged communities, and that NIH policies are updated to ensure that diverse input is taken into consideration during grant reviews. The UN report on the Right to Science in the Context of Toxic Substances cited our contributions and echoed some of our key messages.