Note to Readers: This is the final issue of Endocrine Insider in its current format. To reduce the number of emails we send to our members, the Society is consolidating its communications into weekly and monthly updates. Beginning in 2018, please look for the latest advocacy and policy news in this new format.
Legislative Accomplishments & What Is Left to Do Before the End of the Year
Over the past year, the Endocrine Society has been working hard to advocate on behalf of your practice, patients, and research. While the current political landscape has been challenging, we continue to make headway in increasing biomedical research funding, ensuring access to high-quality care, and improving the prevention and treatment of endocrine conditions. We secured a $2 billion increase for NIH in FY 2017, obtained Medicare coverage for continuous glucose monitors and the Diabetes Prevention Program, protected access to essential health benefits, worked to identify solutions to rising insulin costs, succeeded in getting the European Union to reject flawed criteria for endocrine-disrupting chemicals, and influenced court cases by weighing in on transgender health. While we are proud of these achievements, there is still much to be done before Congress leaves for the holidays—and we need your help. Please see the summary of where things stand and what you can do to help below:
The US House of Representatives and Senate are poised to pass a massive tax overhaul package this week and have the bill on the President’s desk before Christmas. The legislation aims to lower taxes on businesses and individuals, open a part of Alaska to oil drilling and roll back a key piece of the 2010 health care law. Enactment of the tax package would be a signature achievement for President Donald Trump and congressional Republicans, marking the first major rewrite of the tax code since 1986.
We shared our concerns about several provisions in the tax package with members of Congress. While we were not able to influence the elimination of the health insurance mandate, our advocacy was successful in retaining the medical expense deduction and the graduate tuition tax waiver, which was proposed to be eliminated by the House. Hundreds of Society members from around the country joined our online advocacy campaign urging Congress to protect the current tax treatment for graduate education. We thank all of you who participated. This is a great example of how advocacy does make a difference!
We remain concerned about the impact of removing the individual mandate tax penalty. The mandate is a key component in aiding guaranteed insurance offerings on the exchanges. The concern is that eliminating the penalty will rattle the insurance market and raise premium rates. Senator Susan Collins (R-ME) insisted on separate action to create stabilization in the marketplace by renewing cost-sharing subsidies for health insurers and adding funding to bolster state reinsurance programs. Senator Collins also urged a budgetary waiver to avoid immediate Medicare provider payment spending cuts if the tax bill package becomes law. While congressional leadership have said there is bipartisan support for Senator Collins’ requests, legislative action on these additional provisions are likely to take place after the tax package is passed.
Funding for the National Institutes of Health (NIH) is a top priority of the Society. To ensure that endocrine researchers can continue their breakthrough discoveries, each year we advocate for steady, sustainable increases in funding for the NIH. In Fiscal Year 2017, the US Congress approved a budget with a $2 billion increase for the NIH, further building on the increase that NIH received in FY 2016. As a result of advocacy by Endocrine Society members, and in collaboration with the broader biomedical research community, the House and Senate Appropriations Committees approved further increases in funding for the NIH in FY 2018. However, the House and the Senate have not yet agreed on a final FY 2018 funding package, and they need to work it all out before Friday night. Not because it's the Friday before Christmas, but because government funding will run out at midnight. There is a plan that the House and Senate pass a temporary stop-gap funding bill that will keep the government functioning through January 19, but it is not certain and, even if passed, there is likelihood that there will be a shut-down show-down in January.
Take Action: It is critical that all members of Congress hear from their constituents about the importance of funding the NIH and the need to raise the current budget caps to protect NIH and other programs from significant funding cuts. Please take a moment this week to join our NIH funding campaign. Taking action is quick and easy and can make a difference!
Another top priority for the Society is the renewal of the Special Diabetes Program (SDP). SDP is actually comprised of two programs: the Special Type 1 Program that funds NIH research and the Special Diabetes Program for Indians that provides diabetes education and prevention programs for American Indians and Alaska Natives. Congress let funding for the Special Type 1 Program expire October 1 and funding for the SDPI will expire on December 31 if Congress fails to act. Congress is currently considering legislation that could include a SDP renewal. While the House of Representatives recommended funding for SDP in the next short-term funding bill, it would do so by cutting funds from the Prevention and Public Health Fund that supports the Centers for Disease Control & Prevention. We have urged Congress to renew SDP, but not by jeopardizing other public health programs.
Take Action: Contact Congress NOW to ensure both SDP programs are included in any legislative vehicle by the end of the year. Our online campaign will provide you with a letter and send it to your congressional delegation. All you need to do is enter EITHER your address OR your email and member ID number.
In 2017, the European Commission released long-awaited criteria to identify endocrine-disrupting chemicals (EDCs). We opposed the criteria because it required an extremely high level of evidence that would result in very few EDCs being identified and regulated, at a high cost to public health. We also opposed exemptions for pesticides designed specifically to act on insect endocrine systems. In the days leading up to the vote, members of the Endocrine Society met with Members of the European Parliament (MEPs) and European Commission staff to explain our objections to the criteria, and how the criteria could be improved to better protect public health.
On October 4, the European Parliament voted to reject the proposed criteria. The Commission then put forward revised criteria that did not include the exemptions. In 2018, the Endocrine Society will continue to work with policymakers in the EU to ensure that the criteria are implemented efficiently and can effectively protect public health from harms due to exposure to EDCs.
The Society has had success this year in bringing Congressional attention to Polycystic Ovary Syndrome (PCOS). We are working with PCOS Challenge, a PCOS patient advocacy group, to amplify our voices on Capitol Hill. PCOS Challenge hosted a Congressional briefing earlier this year, and staff from both associations met with several Congressional offices to educate them about PCOS and ask for their support in introducing a resolution that would recognize September 2018 as PCOS Awareness Month. On November 16, Senators Elizabeth Warren (D-Mass.) and David Perdue (R-Ga.) introduced a bipartisan resolution (S.Res.336) that acknowledges the seriousness of PCOS and calls for increased awareness of the disorder, better diagnosis and treatment, further research, and improving the quality of life for affected women. A House version of this resolution (H.Res.495) was introduced earlier this year. The Society will continue to work with PCOS Challenge and Congress to pass the resolution.
On December 15 The Washington Post published a story about an alleged word ban at the Centers for Disease Control and Prevention (CDC):
"The Trump administration is prohibiting officials at the nation's top public health agency from using a list of seven words or phrases - including "fetus" and "transgender" - in official documents being prepared for next year's budget.
Policy analysts at the Centers for Disease Control and Prevention in Atlanta were told of the list of forbidden terms at a meeting Thursday with senior CDC officials who oversee the budget, according to an analyst who took part in the 90-minute briefing. The forbidden terms are "vulnerable," "entitlement," "diversity," "transgender," "fetus," "evidence-based" and "science-based."
In some instances, the analysts were given alternative phrases. Instead of "science-based" or "evidence-based," the suggested phrase is "CDC bases its recommendations on science in consideration with community standards and wishes," the person said. In other cases, no replacement words were immediately offered."
The news spread like wildfire on social media and cable news. We have heard rumors from within other agencies that the "ban" is Department-wide, and the Washington Post updated its original story, noting new developments and nuances and HHS spokesperson Matt Lloyd issues a statement:
“HHS and its agencies have not banned, prohibited or forbidden employees from using certain words. Recent media reports appear to be based on confusion that arose when employees misconstrued guidelines provided during routine discussions on the annual budget process. It was clearly stated to those involved in the discussions that the science should always drive the narrative. Any suggestion otherwise is simply not true.”
The Endocrine Society is concerned about the reports. We have encouraged Congress to look into this issue and on December 18 Senator Patty Murray (D-WA) and Representative Frank Pallone (D-NJ) sent a letter to HHS to understand the facts. We believe that language matters, but it is even more critical to ensure that the CDC has the funding it needs to continue its prevention and public health programs, including many that directly impact endocrinology. Currently, CDC is facing drastic cuts, which we oppose. We will continue to advocate for CDC and funding for the Prevention and Public Health Fund and keep our members apprised of the situation.
We expect 2018 will bring more political challenges to programs and policies our members care about. Consequently, we will be launching new ways to increase our member engagement in advocacy to help influence policymakers. We are planning a special session at ENDO 2018 to update our members and get more of you involved in our advocacy efforts. We will share additional details in the new year.