September 2018 Newsletter

In this Issue…

Notes from Joe
· Collaboration, Communication and Progress

Washington Update
· Congress Close to Enacting FY 2019 Appropriations Bill that Funds Hemophilia Programs

Payer Update
· Know Your Patients and Their 2019 Insurance Plans

Notes from the Community
· Connecting with the Global Community

Team Alliance Contact Information

Notes from Joe

Collaboration, Communication and Progress
By Joe Pugliese

It has been a remarkable year so far for your Hemophilia Alliance. Year to date, we have 9 new participating members, and I anticipate a number of additional centers becoming participating members before the year is out, likely making 2018 a record year for us. What makes this all the more remarkable is the simple fact that there are fewer and fewer possible new members every year. There are a total of 135 federally-supported centers in the US and now 97 of them are participating members of the Alliance. In addition to being federally supported, a center needs to be a non-profit entity listed on the Office of Pharmacy Affairs website with an HM designation.

It is reasonable to ask what is so appealing about becoming a member of the Alliance especially now. I think the simple answer is the Alliance has become a go-to organization for all parts of our community. There are numerous cases of how this is working but today I want to focus on just a few specific examples.

The first is in the area of advocacy for not just Alliance members but on behalf of the patient community. In the past two years, we have co-signed a number of letters and statements with the national bleeding disorders patient organizations defending issues that are critical for the community we serve. These letters have emphasized the need to ensure access to insurance and maintain ACA patient protections, such as the elimination of lifetime caps and protections for people with pre-existing conditions. It is not surprising that consistently supporting messages near and dear to the patient community has opened up numerous opportunities for collaboration. You will see at the upcoming Alliance member meeting that this collaboration is already paying significant benefits.

The second is the relationships we enjoy with our manufacturing contract partners. Many of our partners have written letters of support for our ongoing access to 340B pricing. They sent letters despite some broader reservations they may have about the overall program because they see the value of the comprehensive care model. As we have seen recently, this is true both for companies who have long been involved in the community as well as newcomers.

The third is our ongoing outreach to HRSA’s Office of Pharmacy Affairs (OPA), which administers the 340B program. As reported earlier last week through an email communication, this collaborative communication with manufacturers and OPA paid big dividends when we were able to identify and implement a solution around the change in Bioverativ’s NDC numbers. It is worth noting that without the years of working on having a useful relationship with both organizations it is most likely there would have been no resolution. When you see your Bioverativ rep make sure you give them a big thank you for working for the benefit of the HTC network and we are also so appreciative of Captain Krista Pedley, the Director of OPA, for identifying a path forward.

We look forward to many more years of productive collaboration.

Washington Update

Congress Close to Enacting FY 2019 Appropriations Bill that Funds Hemophilia Programs
By Johanna Gray

Fiscal year 2019 begins on October 1, 2018 and for the first time in more than twenty years, Congress appears likely to pass the Labor, HHS, Education Appropriations Bill that funds health care programs before the next fiscal year begins! This bill is generally the most controversial of all of the appropriations bills, because it includes politically divisive programs such as family planning grants and the implementation of the Affordable Care Act. As a result, Congress usually cannot reach consensus on the text of the bill and passes a short-term continuing resolution (CR) to continue funding the government and give them more time.

But this year, Congress has reached agreement. The final bill includes a significant $1.25 billion increase for the National Institutes of Health, a policy championed by many advocates for research funding. More specifically for our community, the bill maintains current funding levels for the hemophilia programs at the CDC and HRSA. Besides ensuring that funding will continue, another benefit of Congress passing a full year spending bill is that grant awards should also be for a full year rather than in pieces, as has happened recently. One note is that it has recently been made public that the Administration is using its authority to reallocate approximately $200 million across various HHS accounts to pay for the costs of housing unaccompanied immigrant children at the border. As a result, small cuts to the HTC grants may occur.

The Senate passed the bill on September 18th and the House is expected to pass the bill next week so that it can go to President Trump for his signature before the October 1st deadline. President Trump continues to want Congress to prioritize funding for his border wall, but he is expected to sign this bill into law, avoiding a government shutdown. The legislation funds health care and defense programs for the full year and provides a vehicle for a CR for several appropriations bills that have not yet passed, including funding for the Departments of Homeland Security and the State Department. Accordingly, there will be another appropriations bill for these programs in early December, giving President Trump another opportunity to push for his priorities after the election.

Payer Update

Know Your Patients and Their 2019 Insurance Plans
By Jeff Amond

Open Enrollment season is just around the corner. Now is a great time to begin preparing and contacting your patients about their 2019 health insurance to determine if there will be changes that may impact the clinical and pharmacy services you provide.

November 1st kicks off the open enrollment period for the ACA marketplace plans, which goes until December 15th. Given all the uncertainty in the health insurance market, some plans’ premiums are increasing significantly. Despite that, people may be able to enroll in more generous or less expensive coverage than last year depending on their state and individual financial situation. It will pay to shop around. Given the shorter time frame to enroll and the significant premium changes, we encourage you to contact your patients enrolled on ACA plans to be sure that they reenroll in coverage before December 15.

Some additional items to consider about the ACA for your patients:

  • Even though the ACA Open Enrollment Period is over for 2018, your patient can still enroll in or change a Health Insurance Marketplace plan if they have a life event that qualifies them for a Special Enrollment Period. Please see for complete details.
  • If your patient qualifies for Medicaid or the Children’s Health Insurance Program (CHIP), they can apply anytime.

Some additional items to consider for your HTC include:

  • Do you have a solid process in place to track your patients’ insurance?
  • Do you know if their insurance is a fully insured or self-insured plan?
  • Do you know if your Pharmacy Program can dispense clotting factor?
  • Do you need the support and assistance from the Hemophilia Alliance to enhance your Pharmacy Program and Insurance Contracting efforts?

The Alliance Team is here to help. We have developed a Patient Insurance Tracking Spreadsheet and Insurance Questionnaire to assist in your efforts. Please contact one of the Alliance Team Members to discuss how we can assist you in your Payer Relations and Insurance Contracting efforts.

Notes from the Community

Connecting with the global community


In developed countries, tremendous strides in improving diagnosis and treatment mean that people with inherited bleeding disorders now live with a degree of certainty that previous generations would not have thought possible. However globally, the unfortunate reality is that a majority of people with bleeding disorders still receive very inadequate treatment or no treatment at all. The percentage is even higher for those with von Willebrand disease and rare factor deficiencies. Much more work remains to be done to resolve this discrepancy.

In many developing countries, individuals face challenges accessing proper care. The World Federation of Hemophilia (WFH) improves and sustains care for people with inherited bleeding disorders around the world. WFH USA advances the global mission of the WFH in the United States, providing American citizens, foundations, and corporations the opportunity to advance our shared vision Treatment for All people with bleeding disorders worldwide.

Though the support of many dedicated healthcare professionals and patient leaders, we provide the global community with free access to education resources and hundreds of workshops for medical professionals and patient leaders in over 100 countries per year. Basing our work on a comprehensive development model with the aim to achieve sustainable comprehensive care, this patient-centric model ensures all our programs and activities include the needs of patients, as well as their family members and healthcare providers.


Even when hemophilia care systems are built and strengthened in these developing countries, the absence of clotting factor concentrates (CFC) has meant that many children face a lifetime of physical pain and disability. The long-term effects can be seen in these communities, especially since treatment options do exist and should be made available to those most in need.

Since it was created in 1996, the WFH Humanitarian Aid Program actively addresses this gap. As the volume of treatment product donations around the world increases through the work of this program, the number of individuals treated has started to steadily increase. In 2015, Bioverativ, a Sanofi company, and Sobi helped make the WFH Humanitarian Aid Program more sustainable and predictable through a significant contribution of donated treatment products. In addition, the companies committed substantial financial support for the program’s operational needs.

Bioverativ’s and Sobi’s visionary contributions translate into 500 million IUs over five years (2015-2020). These two companies have been joined by others: Grifols made an eight-year commitment (2014-2021) totaling 200 million IUs; CSL Behring made a 10-year commitment (2009-2018) for a total of 22 million IUs; and Green Cross’s three-year commitment (2017-2019) is for 6 million IUs.

The expansion of this program has resulted in over 160 million IUs of CFCs being channelled to 60 developing countries in 2017 alone. These donations reached more than 16,000 patients and were used to treat more than 45,000 bleeding episodes. The program also helped make possible 781 major and minor surgeries and allowed 1,210 patients to be put on prophylactic treatment.

More contributors are needed to help increase multi-year donations and ensure a steady flow of treatment products to the global network. We need the support of the whole bleeding disorders community to ensure that sustainable levels of donations and financial support are increased, together helping solve this urgent public health challenge.

To learn more about the WFH Humanitarian Aid Program, visit


WFH Session: Connecting the Global Community
Join us at NHF’s 70th Bleeding Disorders Conference during the WFH session on Thursday, October 11 at 12:00 noon to learn more about the actions undertaken by WFH and WFH USA to address this gap in care and treatment and how you get involved with the global community.

Chapter Luncheon: Overview of Alliance Support for the Community
The Annual Chapter Luncheon recognizes the importance the Chapter staff across the country. Attendees will learn about the breadth of the Hemophilia Alliance's support for the community. Additionally, they will learn about the tremendous progress WFH USA has made in bringing lifesaving therapies to countries around the world and how working together we are making a difference. The Annual Chapter Luncheon, scheduled for 12 noon on Thursday, October 11th, is sponsored by Hemophilia Alliance.

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