Notes from Joe
Welcome to Chapters!
By Joe Pugliese
I joined the Hemophilia Alliance at the beginning of 2006. In June of that year, I attended a community-led meeting facilitated by Val Bias (then with the Bias Group; Val wouldn’t join NHF until 2008). Back then, there was only one recombinant FIX and five RFVIIIs on the market but gene therapy was just around the corner. While you had to be vigilant, most patients had choice of products and providers. It was the good old days.
During the meeting, I promised chapter leaders that the Alliance would give back and invest in the patient organizations at the national and state level. I pleased to say that because of a lot of hard work by people from HTCs across the country we have made good on that promise. The focus and the capabilities of the Alliance have grown over time. We are now in a position to expand on that promise we made back then.
Effective with this February 2018 edition of the Alliance Newsletter, we are making this monthly newsletter available to all chapters who would like to receive it. I believe that the challenges we face as a community are the biggest we have faced since the early 80s. It is paradoxical that we now have an embarrassment of riches in terms of the variety, safety and efficacy of therapies, with even more on the way. And now gene therapy is nearly a reality. At the same time, the challenges we are face in maintaining access to care and sustaining the comprehensive care model have never been greater.
We believe the community is best served by having a strong, robust network of federally-supported treatment centers and that together, we can navigate these challenging times. We know that open, transparent and timely communication will be vital to our success. I’m pleased that we now have the resources to bring our message directly to you and your members at your annual chapter meetings. If you would like to have the Alliance attend your chapter meeting, please let me know. We are not an organization of unlimited resources, but as we have demonstrated through our support of The Alliance Foundation and other avenues, we believe in giving back to the community.
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By Joe Pugliese
We have heard from a number of members who have expressed concern about two pieces of patent litigation that are currently in the courts. First, in a lawsuit involving Shire and Genentech, Shire is asserting that Genentech is infringing on patents Shire holds in the production of Hemlibra. In a second lawsuit, Bioverativ is asserting that CSL’s Idelvion product infringes on three patents directed to methods of administering Idelvion. We recognize the importance of protecting intellectual property. As noted elsewhere in this Newsletter, the bleeding disorders community has benefited the tremendous investment that has been made in producing better technologies. We encourage all parties to make sure that protecting these intellectual rights does not deny patient’s access to any of these life-saving therapies.
Notes from Marisela
Update from the Alliance Board Strategic Planning Meeting
By Marisela Trujillo, Hemophilia Alliance Board Chair
The Hemophilia Alliance Board, staff and consultants started 2018 with a review of a successful and challenging 2017. The year was marked by a number of milestones: our membership grew for the 12th straight year and we now have 100 members. Our members enjoyed substantial savings utilizing our supply agreements and HA gave back in excess of $2,000,000 to the community. It was particularly gratifying that HA and our namesake organizations were all in the forefront of helping those most in need of assistance, especially our community members impacted by the multiple hurricanes. As noted elsewhere in the newsletter, Puerto Ricans in the bleeding disorders community are still a long way from returning to a normal life. We are very grateful to our members for their support and our contract partners, who make all the work and good we do here at the Alliance possible.
While it is always good to celebrate and recognize past accomplishments the purpose of the strategic planning meeting and the prework done by smaller groups of the board members and Team Alliance was to prepare us for 2018 and beyond. We all know that there are a variety of challenges facing all us. Everyone was ready to go to work on plans and goals for the coming year upon arrival in New York in late January during the day and a half meetings.
The group outlined plans and goals in the areas of Communication, Payer Initiatives, Advocacy/Regulations and Group Purchasing. Our board members represent many backgrounds within our HTCs and bring multiple perspectives from financial and clinical to advocacy and operations. This fostered a great dialogue and thoughtful consideration to what stands ahead for the Hemophilia Alliance and our members. Since the Hemophilia Alliance has also grown significantly in membership, it was important that we spent some time within the meeting outlining future organizational needs.
There are many 340B challenges in our continued strategic direction and navigating priorities is a top goal that we will focus on through the many strengths of the Hemophilia Alliance Leadership with the support of the Alliance board. Many thanks and appreciation go out to our Board and Team Alliance that spent a concentrated amount of time focused on the future of Hemophilia Alliance. We plan to present additional details at our March member meeting in New Orleans, so please plan to join us.
We need YOU for the Alliance Hill Day!
The debates in Washington over the 340B program are heating up and there has never been a more important time for HTCs to come to Washington to educate Members of Congress and staff about HTCs and our participation in 340B. We need YOU to join us at the Alliance Hill Day in April.
Here are the details:
Agenda for the Event
Wednesday, April 25:
- Physician-Led Meeting: 1:30-3:30 PM
- Alliance Member Meeting and Hill Day Training: 5:30-7:30 PM
Thursday, April 26th:
- Meetings on Capitol Hill in teams: 9:00 AM to 4:00 PM
Patient participation: Like last year, the Alliance is able to fund one HTC patient per center to come to Washington to join us on the Hill. This should be a patient who is enthusiastic about your HTC and 340B program and is willing to share his or her story. More logistical information will be forthcoming about this aspect of our Hill Day.
Educating vs. Lobbying: Many HTCs have questions regarding whether and how they can advocate. Lobbying is often treated like a bad word. However, personnel at HTCs ARE allowed to participate in the Alliance Washington Days, since we will be educating Congressional members and staff rather than directly supporting or opposing a piece of legislation. Our visits focus on that educating Congress about the role of HTCs in providing comprehensive care for the bleeding disorders community and discussing how 340B program income enables that care, not lobbying, so you are safe to participate. If you are planning on coming to our Hill Day, we welcome you to attend the Physician-led meeting and Alliance Member Meeting the day before.
Registration link: See here.
Questions? Please contact Sean Singh (firstname.lastname@example.org) with any logistical questions or Johanna Gray (email@example.com) with any questions about participating in the Hill Day.
From the ACA to 340B to funding for HTCs, there is an alphabet soup of reasons why your voice and your stories about your HTC are critically important today. Please join us!
By Jeff Blake
During 2017 and early 2018, the Payer Team has been working with members to complete our Insurance Questionnaire and we will continue this service for the remainder of 2018. The intent of the insurance questionnaire is to gather key payer information and payer issues HTCs are encountering. In addition, the Payer Team has provided a Patient Insurance and Clotting Factor Utilization Spreadsheet to assist HTCs in better understanding their patients’ health insurance. The data gathered has been very helpful to track payer trends and issues. The most common issue our members face is the “Self-Insured Health Plan Specialty Drug Carve Out,” which requires the patient to receive their specialty drugs, including clotting factor, from an exclusive specialty pharmacy.
Recently, the Payer Team has helped several HTCs overcome this issue with some of their patients. The Payer Team and HTC staff have worked with Third Party Claims Administrators (TPAs), insurance brokers and consultants and directly with self-insured employers to overcome this issue. The results have been very favorable. We have been able to highlight and demonstrate the benefits and value of the HTC integrated care model and have the HTCs’ pharmacy program dispense the clotting factor medication to their patients and save these self-insured employers 10% – 25% on the clotting factor.
Do you have patients with a self-insured health plan with a specialty drug carve out? Would you like to get more organized tracking your patients’ insurance and better understanding of key payers and issues? Please contact one of the Hemophilia Alliance Team members to discuss how we can help you with your payer needs and issues. WE WORK FOR YOU!
Notes from the Community
Update on Disaster Relief – Together we Care
By Kimberly Haugstad
Summary of Assistance Provided
We remain in contact with families affected by natural disasters. Requests from families in California, Texas, and Florida have dwindled, but we continue to provide regular assistance to families in Puerto Rico who are still coping with the aftermath of Hurricane Maria.
As of January 31, 2018, Helping Hands (for “Together We Care”) has processed 80 applications for disaster relief. *51 unique households, 29 instances, where we have provided P1: Initial Relief and then P2: Rebuild Support. Total relief funds distributed to date are $19,708.53. Moving into February, there are 13 pending applications in the works with needs identified at approximately $26,000 and others to follow up on.
Primary types of assistance distributed includes groceries, batteries, clothing, toiletries, cash assistance for household bills, aqua tablets, water, first aid items, cold packs, and other basic needs and rebuild supplies.
About Together We Care: Disaster Relief Efforts
The bleeding disorders community has a long history of rallying around our families in need. In 2017, the US faced an unprecedented number of natural disasters. National bleeding disorders organizations such as Hemophilia Federation of America, the National Hemophilia Foundation, the Hemophilia Alliance, Hemophilia Alliance Foundation, LA Kelley Communications, the national network of hemophilia treatment centers and others have partnered to create the “Together We Care” disaster relief assistance fund. Families helped have been gracious and thankful for the caring and support.
Save the Date for 2018 Events!
Save the date for Alliance events in 2018, including:
- February 28 – March 2: Linda Gammage Social Worker Conference 2018 in San Antonio, TX
- March 25-27: Alliance Members Meeting in New Orleans, LA
- April 25-26: Physician Meeting and Alliance Hill Day in Washington, DC
- September 23-25: Physician Meeting and Alliance Members Meeting in Las Vegas
Team Alliance Contact Information
We work for you! Please don’t hesitate to contact any of us with any questions or concerns: