Advocacy in Action: NIH Funding, Drug Pricing, and More

Here is a quick run down of major issues being discussed by policymakers from an endocrine perspective and the Society’s current advocacy work. Let us know if you would like additional information or have any questions.

What’s Happening in Washington

Health care headlines dominated Capitol Hill this week, thanks to a hearing on the progressive Democrats’ “Medicare for All” bill (HR 1384), a hearing looking at ways to lower drug spending in Medicare, and a debate over funding for health programs at the Health and Human Services Department.  The Endocrine Society was also on the Hill, briefing congressional offices about diabetes self-management legislation and working with lawmakers on the details of new legislation that would regulate certain chemicals used in cosmetics and personal care products.  In addition, we were at NIH talking with NIDDK about funding and we met with representatives of pharmaceutical companies to find better ways to alert patients to lower cost options for their prescriptions.  See below for some highlights:

NIH Funding – The appropriations process is moving forward in the House of Representatives, sort of.  The House Labor-HHS Appropriations Subcommittee approved a draft of its FY 2020 spending measure by voice vote.  The Subcommittee bill was a BIG WIN for the public health and research community.  All public health agencies in the subcommittee’s jurisdiction received meaningful increases, including important investments in many public health priorities-health research, public health infrastructure, emergency preparedness, women’s and children’s health, health professions training, and expanded access to care.  The bill includes all of our asks from our appropriations testimony:

• $41.1 billion for NIH, an increase of $2 billion compared to the enacted FY 2019 funding level. The additional $2 billion will provide a nearly five percent increase for each NIH institute and center.
• $8.3 billion for CDC, which is $921 million above the 2019 enacted level and $1.7 billion above the President’s budget request. This includes $168 million, an increase of $20 million, for diabetes, and $30 million, an increase of $5 million, for the Diabetes Prevention Program.
• $400 million for the Title X family planning program.

While the Subcommittee bill represents a great advocacy victory, it is important to understand that the increases proposed in the bill will not be possible unless Congress raises the austere spending caps currently in statute. We continue to advocate to Congress and the White House to work together to avoid the scheduled $55 billion spending cliff. Otherwise, most federal health agencies will continue to be underfunded at levels below those of FY 2010 and the promise of this spending bill will not be realized.  Our work is not done, so if you have not taken action on our appropriations advocacy campaign, please do so now.  The online advocacy campaign is available here.

Inside the Room Where It Happened – We understand from those in the room that no Republicans voted for the bill. Ranking Member Tom Cole (R-OK) said he did support some increases in the bill–including the increase for the National Institutes of Health (NIH)–but couldn’t support the bill because of the top-line amount was unrealistic. He said he and his Republican colleagues will have amendments in full committee.  The full committee markup is expected to take place next Thursday, May 8.

Drug Pricing Battles – Lawmakers continue to struggle with how to address the issue of rising drug prices. Even as committees have moved forward on bipartisan drug price bills that are supposed to be on the House floor in May, the party still hasn’t finalized how to approach one of its key campaign promises, direct Medicare negotiation with drug manufacturers.   Speaker of the House Nancy Pelosi’s (D-CA) health policy aide is crafting a proposal that would use arbitration as a way to control drug prices in Medicare, but the Progressive Democrats prefer a version of negotiation proposed by House Ways & Means health subcommittee chair Rep. Lloyd Doggett (D-TX) that would allow the government to issue licenses to competitors if drug makers’ negotiations with Medicare break down.  (Note:  licensing may not work with insulin and other biologics). Meanwhile, Former FDA commissioner Dr. Robert Califf and former Acting Administrator of CMS Mr. Andy Slavitt shared their perspective in a JAMA article Lowering Cost and Increasing Access to Drugs Without Jeopardizing Innovation. As they see it, the most effective ways to address pricing surround four categories: (i) Importation; (ii) reduction of administrative (PBMs are discussed at length) and marketing activities; (iii) direct negotiations between federal payers and industry; and (iv) creation of a value-based system.

We continue to do our part to make sure congressional offices prioritize a solution for insulin.  This week Endocrine Society Chief Professional and Clinical Affairs Officer Rob Lash presented at a briefing, “Moving the Needle on Diabetes” sponsored by the Diabetes Patient Advocacy Coalition (DPAC).  He shared our recommendations on access to affordable insulin and also encouraged support for legislation to expand coverage for diabetes self-management training.

New Rule Allows Health Care Workers to Refuse Care for LGBTQ, Women – The Trump Administration issued a long-awaited Final Rule on Thursday that revises existing regulations to ensure enforcement of Federal conscience and anti-discrimination laws. These regulations protect individuals and health care entities who refuse to provide health care to a patient because it violates their conscience or religious beliefs. We submitted comments on the Proposed Rule in early 2018 expressing concerns that these regulations could limit access to health care for transgender patients and women needing reproductive care. We are reading the Rule and will share our analysis in a future update.