May 2018 Newsletter

In this Issue…

Notes from Joe
· A Penny For Your Thoughts

Washington Update
· Trump Administration Releases Drug Pricing Blueprint

Payer Update
· Too Much Work and Too Little Time

Alliance Update
· Alliance Recruiting for a Director, Payer Relations for the Western United States
· Information at your Fingertips
· Save the Date for 2018 Events!

Notes from the Community
· The Importance of Attending the Linda Gammage Social Work Meeting
· Social Work Planning Committee Member Needed
· Update on 2018 HTRS/NASTH Research Colloquium

Team Alliance Contact Information

Notes from Joe

A Penny For Your Thoughts
By Joe Pugliese

The second week of May was an interesting week in the never, never land of high drug prices. The week began with the annual summit of the Alliance for Integrity and Reform of 340B (AIRx 340B), the leading opponent to 340B. I am just perplexed by their arguments that a program that is at most 5% of the US marketplace is causing drug prices to rise. Likewise, some manufacturers complain about having to give discounts of 40-50% (more than double the statutory 340B discount), which only occurs if they raise prices consistently above the CPI (Consumer Price Index). If they raise price high enough, often enough, they’re required to sell to covered entities for a penny (more on penny pricing below). They can also voluntarily offer sub-ceiling price discounts to improve their competitive advantage. One can only assume that in either case they have decided that their pricing strategies are in the best interest of their shareholders.

The week ended with the long-awaited American Patients First, the Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. This is also explained in more detail below. I find it most curious that President Trump (who has consistently followed through on his campaign promises) isn’t doing so in this case – or at least, not yet. There isn’t much at all in the Blueprint that would actually lower costs, though I was glad to see that PBMs received some scrutiny. In fact, Wall Street responded to the Blueprint by actually raising pharma stock prices. The Blueprint does mention 340B policy and other concerning proposals for HTCs and the patients we serve, so we will be advocating on the Blueprint alone and in coalition.

At the same time, the Trump Administration has once again delayed a final rule that would implement penny pricing as well as civil and monetary penalties for violating the statutory pricing rules of the Veterans Health Care Act It was a stroke of genius as a disincentive for significant price increases and I’m baffled that the Administration would delay this rule while releasing a plan they suggest will lower drug prices. While pharma companies and self-proclaimed ‘experts’ complain that penny pricing isn’t fair, again, it only affects them if they voluntarily and significantly raise their prices. They are quick to gain the advantage of having taxpayers pay for their products through federal and state insurance programs, which effectively subsidizes 50% of their operations, but complain about the lack of a free market for a small program. It strikes me that it would be especially unwise to eliminate one of the few deterrents to price increases that exceed the consumer price index. We joined in with colleagues in the 340B Coalition to protest this rule; our letter can be found here.

Let me end on a positive note. Also released in May was a letter of support of 340B providers. A total of 71 patient, consumer and provider groups (that are not covered entities) wrote to Congressional leaders to express, “We stand together to oppose any efforts to diminish the 340B program’s proven ability to help serve vulnerable patients and communities.” Our thanks go to HFA and NHF, both of which signed onto the letter. We appreciate their support! We will continue to seek other ways to engage the patient community to support our advocacy efforts.

Washington Update

Trump Administration Releases Drug Pricing Blueprint
By Johanna Gray

On May 11th, President Trump released “American Patients First,” a blueprint for the Administration’s intent to address the issue of high drug prices. The plan includes actions the Administration intends to take as well as a list of questions and proposals for which HHS is seeking feedback during a 60-day comment period. The ideas are divided into four main categories: increased competition, better negotiation, incentives for lower list prices, and lowering out-of-pocket costs.

As anticipated, the blueprint includes several elements relevant for HTCs and the bleeding disorders community. First, the blueprint does address the 340B Program. Rather than suggesting imminent policy change, the document includes a request for information with many questions related to 340B, on topics including growth of the program, patient definition, and ways to prevent duplicate discounts in Medicaid. Besides 340B, other policy areas include:

  • Moving some or all Medicare Part B drugs to Part D, so that PBMs will be able to negotiate lower prices;
  • Introducing a Competitive Acquisition Program for drugs in Medicare Part B;
  • Evaluating whether policies should be changed relative to manufacturer co-pay programs; and
  • Creating a new demonstration in Medicaid for up to 5 states to test drug coverage and financing reforms.

There remain many questions about how specific proposals would be implemented, as well as how the Administration will respond to comments in areas for which they ask questions. The Alliance will likely respond to the blueprint in coalition and individually, and will continue to monitor Administration activities on drug pricing.

Payer Update

Too Much Work and Too Little Time.
By Jeff Amond

Too much work and too little time. That is how I felt most every day when I worked at an HTC. That feeling is all too common for many HTCs across the country. As a Social Worker/Insurance Specialist at my former HTC, most of my time was spent helping our current clotting factor pharmacy patients with their insurance and financial issues. When we lost a clotting factor patient to a specialty pharmacy, I just didn’t have the time nor the resources to take on that fight. The good news for all of you out there who also struggle with this problem is that myself along with the rest of the Hemophilia Alliance Team have the time and the resources to help. Let us help you win back the clotting factor business to your center. Let us help with your insurance issues. We are only a phone call away.

Winning back the business…a Payer Relations Perspective

Earlier this year I received a clotting factor utilization spreadsheet from an HTC. The spreadsheet consisted of a de-identified list of patients that are unable to receive clotting factor from their HTC. Once I reviewed the list, I arranged an in-person meeting with the HTC staff to develop a game plan for winning back the business. We then signed a Business Associate Agreement between the HTC and the Hemophilia Alliance, which allowed for more detailed conversations. The first patient we focused on was extremely unhappy with his current specialty pharmacy. This patient’s employer had a fully-insured plan that required clotting factor to be dispensed by a national specialty pharmacy. The patient was willing to do everything he could to give us the best chance of getting him back to his HTC pharmacy, including signing a Release of Information.

I began by reaching out to the insurance company. I was able to connect with the Manager of Contracting and Provider Relations, who was very interested in the HTC integrated model of care along with cost-saving opportunities from our pharmacies. The initial conversations were very productive and led to an in-person meeting with their Pharmacy Director. This meeting went better than I could have imagined. The Pharmacy Director was sold on the HTC model of care, though of course the significant savings they would receive from the HTC pharmacy was also a great selling point. In the end, a Single Case Agreement was signed between the HTC and the insurance company. The pricing they received from the HTC for this patient will save them 20% on all 2018 claims. The most important part of this WIN is that the patient can once again get his clotting factor from his HTC. A WIN for the patient, a WIN for the insurance company and a WIN for the HTC.

HTC Perspective

Collaboration with the Hemophilia Alliance Team works! We are once again able to serve a long-term customer that had been unable to work with us for a few years due to his insurer’s narrow network for Specialty Pharmacy. We now have a happy patient and a VERY happy insurer saving more than $200,000 a year on this case alone.

Next Steps…

The HTC and the insurance company are currently working on a long-term contract that will allow the patient to continue to get his clinical care and clotting factor from the HTC.

Please contact the Hemophilia Alliance Team to learn how we can assist your HTC in winning back the business. Your member dues support the Alliance payer team, as well as our advocacy, legal, and operational support services and GPO agreements.

Alliance Update

Alliance Recruiting for a Director, Payer Relations for the Western United States

The Hemophilia Alliance is currently recruiting for a Director, Payer Relations for the Western United States. This position reports to Jeff Blake, the Senior Vice President Payer Relations of the Alliance. The position is responsible for the payer relations activities of the assigned territory and participating in meetings with patient advocacy organizations. More information on the position and how to apply may be found here. Anyone with questions on the position may reach Jeff Blake. All resumes, CVs and applications must be received by June 22, 2018.

Information at your Fingertips
By Sean Singh

We continue to invest time and resources into providing as many resources as possible for you and your center and regularly update the Alliance website. As a reminder all member center’s team members can access the member’s section. If you do not have a username, the process to get one is easy. Here are the steps to register for a username and password:

  • Go to the our homepage (see screenshot below)
  • In the upper right hand corner click on the word Join
  • It will take you to this page where you just have to complete the form by filling in the information. You will have to use your work email address to register. Once you have completed the form. Please click REGISTER. If you have any questions about the website or the process to register please let me know.

The member’s section has the presentations from our recent meeting in New Orleans and all the previous member meetings. In addition, you can download or view Alliance team member webinars on your computer, tablet or smartphone and access a large library of legal documents and additional resources.

The website is a great way to network with your peers. There is a list of all our members and their contact information. Feel free to use this list to contact other centers and share solutions, inquire about ways to overcome obstacles or have new employees contact veteran team members at other centers. Networking within a state or region makes it easier to resolve issues.

The Alliance events tab has links to register for our upcoming meetings and webinars. Should you have any issues or questions regarding the website please contact Sean Singh at or 727-388-7326 (office), 813-748-7226 (mobile).

Save the Date for 2018 Events!

Save the date for Alliance events in 2018, including:

  • September 23-25: Alliance Members Meeting in Las Vegas – Register Here

Notes from the Community

The Importance of Attending the Linda Gammage Social Work Meeting
By Chartara Gilchrist, BA, Social Worker II, Augusta University Blood Disorder Center

Social work is a vital role on a hemophilia treatment center team – through support and advocating inclusiveness for our patient population. Getting over the stigma that others may have, which I believe is better today, but still exists, is an important process in social work. Living a more fulfilling life should be the goal for our population. Thus being a social worker at Augusta University Blood Disorder Center, having a seat at the table is very important when collaborating to obtain that goal. It has been an honor to have attended the Hemophilia Alliance/Linda Gammage Social Work Meeting over the past twenty-one years. In doing so, it has allowed me to become well-versed on a variety of topics, returning with a host of information that I have shared with my patients and staff. On behalf of myself, staff and patients, we are very appreciative.

At present, I am on the social work planning committee for the Linda Gammage Social Work Meeting and it is has given me great joy to be able to work alongside such a great group of people in devising future meetings! Over the years, we have received positive feedback from other HTC social workers regarding the significance of our meetings and how many of them look forward to attending, annually. Without the risk of comparing larger meetings to the Linda Gammage Social Work Meeting, some of the social workers have made comments regarding a smaller group being more engaging. Although I have attended much larger meetings and have learned a great deal as well, I do believe interacting with a smaller group has been more advantageous relating to intimacy and networking. Hopefully, the funding continues with the Linda Gammage Social Work Meeting, because there are many HTC social workers who are unable to attend NHF, because of the lack of funding.

Over the past two years, we have discussed issues that may have seemed distant from our regular bleeding disorders work, but I see it differently. Last year, we discussed sex trafficking, and the planning committee later heard from an HTC social worker about how she was able to intervene in a related situation. This year, we discussed the LGBTQ community, where a nurse from Emory University Hemophilia Treatment Center presented a case study of a bullied transgender patient. It is important to acknowledge that our population is not immune from these social issues, and to recognize that in order to be an effective social worker and HTC team member, we have to be inclusive, recognizing that is our differences that make us connected as humankind.

I sincerely encourage all of my social worker colleagues to attend the next meeting, and on behalf of all of us, I thank the Hemophilia Alliance and CSL Behring for their long-time support for the program.

Social Work Planning Committee Member Needed
The Hemophilia Alliance seeks to fill a vacancy on the Planning Committee for the Annual Linda Gammage Social Work Conference. Ideal candidates should be currently employed at a federally-supported HTC. This volunteer opportunity involves working collaboratively with other committee members to identify appropriate topics, recruit speakers and plan/evaluate programs. Committee members participate in conference calls and one in-person planning meeting per year, if needed. The role generally requires a commitment of about two hours per month. The term is three years. Interested individuals should contact Sean Singh at

Update on 2018 HTRS/NASTH Research Colloquium
By Mark Plencner, R. Ph.

The first-ever HTRS/NASTH Research Colloquium was held March 6th and 7th 2018 just prior to the THSNA conference. The theme of the Colloquium was “Developing a Sustainable Research Career in Hemostasis and Thrombosis”. The Hemophilia Alliance was a major sponsor and I had the opportunity to attend the event on the Alliance’s behalf.

A major goal of this meeting was to attract, encourage and develop young physician scientists who are willing to dedicate a significant portion of their lives to basic and translational research. Committing to this work can result in many years, even decades, of dedicated research and publishing of results. Attracting people willing to commit to this type of marathon effort is challenging in many ways.

An amazing group of mature MD/PHD researchers gathered at the San Diego Hilton to encourage the conference attendees to follow their dream of discovering why human cells function in a certain way, and how can we use that knowledge to improve the human condition.

Diane Nugent, MD, and Rodney Camire, Ph.D., the co-chairs for the event, set the stage for a series of informative and motivational physician scientists who presented factual, practical, visionary, and occasionally witty information about their careers.

Donna DiMichele, MD, Deputy Director, Division of Blood Diseases and Resources at National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health (NIH), was the keynote speaker and gave a very encouraging report on the goals of NHLBI, and how NIH has increased its investment by way of numerous grant opportunities. If awarded, the grants may be renewable. This can help with balancing family and career as well as assist in reducing the economic pressures.

David Ginsburg, MD, the discoverer of ADAMS-TS13 as a senior researcher, spoke of the importance of good mentors. He mentioned former Duke University Department of Medicine Chair Eugene Stead’s famous quote, “If you can’t get all your work done in 24 hours, you better stay up late.” Time was also a theme “How much is too much”, and “how long is too long.”

Katherine High, MD, gave a vision of the future by speaking about her work with Spark Therapeutics and Gene Therapy.

Melinda Wu, MD, from OHSU, as a young researcher and grant recipient, discussed her research on Sickle Cell Disease using microbubbles, which give off strong acoustic signals, to follow blood flow.

These are just a few examples of an extraordinary group of researchers who presented at this event. In my opinion the research momentum gained because of this conference was remarkable and the dollars invested by the Hemophilia Alliance was money well spent.

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 215-439-7173
Sean Singh 727-388-7326
Jeff Blake 317-657-5913
Jeff Amond 608-206-3132
Karen Bowe 717-571-0266
Johanna Gray, MPA 703-304-8111
Kiet Huynh 917-362-1382
Elizabeth Karan 612-202-3240
Kimberly W. Lackman 813-400-6710
Roland P. Lamy, Jr. 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA 573-230-7075
Ellen Riker 202-257-6670
Mark Plencner 701-318-2910
Michael B. Glomb 202-466-8960
Theresa Parker 727-688-2568
Joel Bellucci 727-504-0491