Going, Going …… Not so fast
by Joe Pugliese, President and CEO

I have been working with the Executive Committee of the Hemophilia Alliance Board for the last several months, planning for my retirement at the end of the year. (Letter from Board Chair) It is an odd feeling working on replacing yourself. We all like to think of ourselves as indispensable at some basic level and of course we are wrong. The Alliance has posted this advertisement (CEO Job Posting) it is on our jobs board on the Alliance website. We are using a third party to assist in the search.

The current team at the Alliance has 311 years of combined experience in the bleeding disorders community. The Alliance has worked hard at growing its bench and maximizing the team’s effectiveness by working collaboratively across all of our key functions. I am confident that we will make this transition not just seamlessly but will accelerate the success the Alliance has enjoyed to date. Meanwhile, I will continue to lead the organization with my usual laid-back approach.

The Alliance just completed another very successful Hill Day. The takeaway we got from a number of offices was that there would be no action taken on 340B this year. While this is comforting, there is no reason to be complacent. We will remain vigilant in safeguarding our members standing in the 340B program. I also want to thank our manufacturers for their long-time support. This year we were delighted to have Mary-Lacey Reuther Head/North America Policy, Advocacy & Government Affairs (PAGA) for CSL Behring join us on the Hill.

Recently, I was forwarded an article, which included a letter from two Republican leaders in the House and Senate posing the question, does 340B pricing cause drug shortages. (Click here for article) Since the establishment of the 340B program in 1992, the discount rates have been fixed at 13% for generic drugs, 17.1% for pediatric drugs and clotting factor, and 23.1% for other brand name drugs. Any discount greater than the statutory discounts listed above is directly related to the drug manufacturer’s discipline around pricing their products. If prices are relentlessly raised above the consumer price index (CPI), the discount increases. Drug manufacturers set prices fully aware of the existence of the 340B discounts. It is hard to understand how 340B would cause a drug shortage.

There are many reasons why drugs go on backorder causing shortages, among them are shortages of raw materials, winner take all bidding through GPO contracts, and after the fact rebates paid to PBMs and health plans that do not allow for investment in maintaining current Good Manufacturing Practices (cGMP). , mismanagement such as misallocation of capital spending heavily on promotion and starving your manufacturing infrastructure. Doing away with 340B might provide a brief respite from the underlying issues outlined above but certainly would not cause drugs to go on backorder.

Please take note of the great overview of the Musculoskeletal Ultrasound (MSKUS) program led by Annette VonDrylaski MD, the Medical Director at University California San Diego HTC. You will learn how you can be trained on using this innovated noninvasive treatment to detect bleeds and assess joint. Just another example of how the USHTCN pools resources to and know to improve patient outcomes. They of course are able to do this because of their access to the 340B program.