Advocacy in Action: NIH Funding, Drug Pricing, Transgender Medicine & Research, and More

Here is a quick rundown of major issues being discussed by policymakers from an endocrine perspective and the Society’s current advocacy work. 

NIH Funding –

The U.S. Senate is now planning to combine the Labor-HHS-Education and the Defense appropriations bills into a package and vote on it on or around Aug. 13. Combining the two bills could be very strategic and advantageous for NIH funding because if successful, the measure could achieve priorities important to Democrats and Republicans in one fell swoop. Democrats have often complained that passing the Defense measure earlier in the process while leaving Labor-HHS-Education bill (which includes NIH funding) sidelined until the end would end up shortchanging domestic social programs, as the big-spending military bill squeezes out available funds under the budget caps. Over on the House of Representatives’ side, the Labor-HHS spending bill was reported out of the full Appropriations Committee July 23, and has been placed on the voting calendar, but don’t expect any floor action until the fall (if at all).

Drug Pricing –

In the U.S. Senate, the Health, Education, Labor and Pensions (HELP) Committee passed a measure (S 2554) seeking to end insurance company gag clauses, which forbid pharmacists from telling patients of cheaper drug price options.

In the House of Representatives, the Energy & Commerce Committee conducted a hearing during which FDA Commissioner Scott Gottlieb outlined FDA’s plans to boost drug competition.  The FDA wants to make clinical research rules more flexible so multiple drugs can be studied in the same trials at the same time. The Commissioner said that the FDA would soon release guidance on how drugmakers might run “continuous” clinical trials, instead of the standard three phases to allow them to reduce the amount of time and the number of patients needed.  He also addressed the FDA’s plans to increase competition for biologics.

And, yielding to increasing pressure about increasing drug prices, AstraZeneca announced it won’t increase drug prices in the U.S. market for the remainder of the year, joining Pfizer Inc., Novartis AG, Roche Holding AG, and Merck & Co. Inc. in freezing prices.

What We Are Working On:

Transgender Medicine & Research – We are conducting a congressional briefing, “Transgender Health:  Meeting Patient Needs through Research and Improved Access to Care” on Monday, July 30.  In addition, we worked with the Endocrine Society’s Communications staff to develop a new Transgender Topic Page on endocrine.org.

NIH Funding – With the Senate poised to take up the Labor-HHS funding bill around August 13, we are preparing an Advocacy Alert to get our members to join our online campaign.  We also will launch a twitter campaign and are collecting stories from members about their NIH-funded research and what is at stake if they do not get funding.  Stay tuned…

Drug Pricing – We are drafting a position statement with recommendations for what Congress could do to address insulin pricing.  We will conduct listening sessions with members during CEU to get feedback on the statement as well as work with the Clinical Affairs Core Committee.  In addition, we are planning our clinical Hill Day for October 1 to discuss insulin pricing.  This will be a special Hill Day because we will bring patients with us from the Diabetes Patient Advocacy Coalition (DPAC).

Women’s Health – On September 12, we will participate in a Public Health Fair on Capitol Hill to educate congressional offices about multiple issues.  Our booth will focus on women’s health issues:  What hormones have to do with women’s health; PCOS research; and our recent position statement on contraception.

“All of US” Study – In May, the NIH launched a cohort study that seeks to enroll 1 million participants to harness their health data into a massive dataset.  We shared several questions with policymakers to ensure the study will include patients with endocrine conditions.

To find out how you can become more involved in endocrine advocacy, please contact [email protected].

 

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