In each issue of HemAware, we “Take 5” with people in the bleeding disorders community and spotlight their efforts with just five questions. Here, we talk with Judith Baker, MHSA, administrative director for the Hemophilia Treatment Center (HTC) network’s Region IX, which represents 14 HTCs in California, Nevada, Hawaii and Guam.
How has your role and that of the HTC changed?
When I began in 1990, our focus was on HIV. With the advent of HIV meds, the HTC network expanded its focus to monitoring all of the complications of hemophilia. We began the largest surveillance of hemophilia complications in the world—the Universal Data Collection (UDC) study, sponsored by the Centers for Disease Control and Prevention. With the UDC serum bank, we can work to reduce potential threats to the blood supply, such as West Nile virus, based on blood samples from UDC participants.
What is the value of a regional HTC network?
The regional system allows clinicians access to more patients so they can develop expertise. Regionalization gives clinicians a structure to share knowledge and formally commits them to providing the best care for all patients in the region. Regional network leaders also identify where there aren’t hemophilia services. For example, in 1990, there were no HTCs in Nevada. Now, there’s a statewide HTC that organizes six outreach clinics in rural and frontier areas.
How do you ensure patients have the same level of care at each HTC in your region?
One way to maintain clinical expertise is to hold annual HTC education conferences. I also work to export expertise where it’s needed. To develop HTCs in Guam, I asked the late Renée Paper, RN, founder of the Hemophilia Foundation of Nevada, to help. She educated the Guam families and clinicians about starting a local hemophilia association and about the concepts of comprehensive care.
Next, I brought clinicians from California and Hawaii HTCs to model a clinic. Later, I brought Nevada HTC nurse Becky Berkowitz, RN, to train the clinicians on how to conduct the UDC study. To strengthen HTC funding, I developed seminars to help HTCs understand the potential benefits of starting outpatient pharmacies that can buy drugs at a discounted rate through the federal 340B program. Between 2003 and 2010, nine more of Region IX’s centers started 340B pharmacies.
How is the money generated by the 340B program used?
It’s required that 340B income be used to reach more patients or provide more comprehensive services, so it helps pay for the salaries of existing and new staff, which we need as the bleeding disorders community grows. It also pays for travel, supplies and other costs for outreach clinics and educational programs.
Is the HTC network under threat from proposed cuts in government spending?
There are many threats that can compromise patient care. Some insurers now require a 30% co-pay. This can impoverish families and push them onto state insurance programs. But state programs are already cutting back reimbursement, which reduces access to HTCs.
Education is such a large part of the lifelong preventive and treatment aspects of bleeding disorders. HTC clinicians spend extensive time with patients and families, making sure they are treating their disorder appropriately at home and know when to call the HTC for dangerous bleeds. However, insurance doesn’t cover the cost of that education.
This past February, Mary Wakefield, PhD, RN, administrator of the Health Resources and Services Administration, visited the HTC at Rady Children’s Hospital San Diego. When she saw that our comprehensive care team included a dietitian, child life specialist, case manager, nurse practitioner, patient advocate and psychologist, she said that the care we provide is what all Americans should have. The HTC network is a model public health and medicine partnership that’s very exciting, but it needs funding and attention. (See “Advocating for HTC Funding.”)