Washington Update, September 2019

Washington Update

Washington Update
By Johanna Gray and Ellen Riker

It was wonderful to see so many familiar and new faces at the meeting in Portland! For people who weren’t there, here is a brief recap of what we shared in our presentation and for those that were, there are a few updates since we spoke last week:

Appropriations: Congress has been unable to pass the twelve annual appropriations bills that fund the government, but did pass a short-term continuing resolution (CR) to fund the government at current levels until mid-November to give them more time. President Trump signed that into law over the weekend, so there will not be a government shutdown this week. The House and Senate versions of their health care spending bills both included level funding for the hemophilia programs and activities at CDC and HRSA, as well as report language indicating their support for activities at both agencies plus bleeding disorders-related research at NIH. We will update members as the debate over federal funding continues this fall.

Medicare/SNF Issue: We have been working to identify Congressional champions to introduce legislation that would improve access to skilled nursing facilities for people with bleeding disorders on Medicare. We have had some very encouraging discussions since the Portland meeting and hope that we will have some exciting news to report very soon. We will need your help to add additional co-sponsors once bills are introduced. More to come!

Drug Pricing: More than 60 bills related to drug pricing have been introduced into Congress so far this year, including a few comprehensive bills being worked on by relevant Committees. The latest version from House Democrats would allow for negotiation of up to 250 of the highest drug prices by the government, with a ceiling set based on the much lower prices paid in other countries. While it remains unclear whether the House, Senate and President Trump will be able to agree on the details for one proposal to become law, we will continue our advocacy on behalf of HTCs and the bleeding disorders community.

Affordable Care Act: The biggest concern relates to the Texas vs United States lawsuit challenging the constitutionality of the ACA. The United States Court of Appeals for the Fifth Circuit is expected to release its ruling on the case this fall, and then the case is likely to move to the US Supreme Court next year. We expect that the law would continue to stand as appeals happen but it is obviously cause for concern and you may hear from your patients who are worried about press accounts.

Accumulator Adjusters: Earlier this year, HHS released a rule that said that insurance plans and PBMs must allow manufacturer co-pay assistance (and count it towards the deductible) for drugs with no generic alternatives. In August, HHS released a new FAQ that walks this back because the IRS says that this rule may conflict with its policies related to high-deductible health plans (HDHPs) and health savings accounts (HSAs). The two departments are working together to resolve the policy dispute but in the meantime, HHS has said that it will not enforce their rule for the rest of 2019 – which means that accumulators can come back for clotting factor assistance programs. We will see more information from HHS on this in a rule that will be released later this fall, but in the meantime, please contact the Alliance if you have a patient facing an accumulator.

Also in this Issue…

Notes from Joe
· Celebrating 20 Years of the Alliance!

Alliance Update
· Alliance Seeking Board Member Nominations
· Portland Didn’t Disappoint
· Linda Gammage Social worker conference – Register for one of the spots

Legal Update
· Keeping and Getting Back What’s Yours

Payer Update
· 15 Key Points From Your Payer Team

Notes from the Community
· HTC Patients Highly Satisfied with HTC 340B Programs Nationwide


Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 727-388-7326
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Johanna Gray, MPA jgray@dc-crd.com 202-484-1100
Elizabeth Karan ekaran@feldsmantucker.com 202-466-8960
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA george@gloetal.com 573-230-7075
Ellen Riker eriker@dc-crd.com 202-484-1100
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org
Karen Bowe
Joel Bellucci webmaster@hemoalliance.org 727-504-0491