April 24, 2017

RE: Proposed Cuts to the HRSA SPRANS Program

Dear Chairs Cochran, Blunt, Frelinghuysen, Cole, and Leahy and Ranking Members Murray, Lowey and DeLauro,

I are writing on behalf of my company, Octapharma USA Inc., to express strong opposition to cuts proposed by the Trump Administration to the Health Resources Services Administration (HRSA), Maternal and Child Health Block Grant, Special Projects of National Significance (SPRANS) program for Fiscal Year 2017. The SPRANS program includes funding for the national network of hemophilia diagnostic and treatment centers (HTCs) that covers the cost of non-reimbursable services provided to patients with this severe and high-cost condition. HTCs are recipients of grants and sub-grants awarded through this program and are eligible to participate in the 340B Drug Discount Program. I am concerned that the Administration’s proposed budget cuts would eliminate or significantly reduce funding for the SPRANS hemophilia program. Such a development would significantly curtail HTCs’ ability to care for people with bleeding disorders and would jeopardize the quality of care for this vulnerable patient population. We ask that you reject this proposed cut and maintain the SPRANS hemophilia program for FY2017.

Octapharma USA is a biopharmaceutical company that provides patients with hemophilia and other bleeding disorders with high quality clotting factors sold to HTC facilities participating in the 340B Drug Pricing Program. These are wilate^® (Von Willebrand Factor/Coagulation Factor VIII Complex Concentrate) for patients with Von Willebrand disease and NUWIQ^® (Antihemophilic Factor, Recombinant) for treatment of Hemophilia A patients. More than 70% of the bleeding disorder population receives specialized care at HTCs, and many receive their clotting factor through HTCs’ 340B drug delivery programs. HTCs are comprised of a multi-disciplinary team of providers – hematologists, nurses, physical therapists, social workers, and pharmacists – that provide highly specialized care to assess and provide treatment for bleeding disorders and their complications, including inhibitors, liver disease and HIV/AIDS. The HTC comprehensive care model is patient-centered and studies have shown that mortality and hospitalization rates are 40% lower for people who use HTCs than those who do not, despite the fact that more severely affected patients are more likely to be seen in HTCs.

In 1974, Congress authorized and funded the national network of hemophilia treatment centers (HTCs). Since then, the MCH Hemophilia program’s patient-centered, multi-disciplinary care provided by HTCs has been a model for patients with special needs. Today, approximately $4.9 million is spread among the national network of 135 HTCs. With this funding, HTCs provide critical, comprehensive multidisciplinary services not typically covered by insurance, such as physical therapy assessments, social work and case management services. The HTC model created by Congress is the model emulated around the world as a model for improving the quality of life and reducing the cost of care for people with bleeding disorders while stretching scarce federal resources. Expert care provided by HTC care is the only way to manage this expensive, vulnerable patient population.

The Veterans Health Care Act of 1992 (PL 102-585) designated HTCs as original covered entities eligible to participate in the 340B program by virtue of their SPRANS grant. The 340B program provides significant value to the HTC patients by enabling access to lower cost prescriptions that have reduced out-of-pocked spending and allowed patients to maintain insurance as well as access to medical, dental, and support services and educational programs that HTCs provide using 340B proceeds. A recent survey of HTCs found that almost 600 FTEs and thousands of otherwise unbillable patient encounters were funded by 340B program revenue (see attached poster for more details). HTCs also receive funding from the Centers for Disease Control and Prevention for HTC research, surveillance, and prevention activities.

It is imperative that individuals with bleeding disorders have full access to the treatments and specialists they need to lead healthy, productive lives. Any cuts to the SPRANS program jeopardizes HTCs’ ability to provide care to individuals with bleeding disorders across the country.

If you have any questions or would like any additional information, please contact me at flemming.nielsen@octapharma.com.

Sincerely,

Flemming Nielsen,
President Octapharma USA

Octapharma’s letter of support: Click here.