States’ Involvement a Blessing and a Curse
Both the practice of medicine and, often, insurance are regulated at the state level. For instance, Medicaid, a state-run program, is very important for patients with hemophilia or other bleeding disorders. What’s happening on the state level to increase access to care and improve quality of care for people with von Willebrand disease?
PAUL: Most recently, the focus has been in Pennsylvania. The Hemophilia Health Care Act has a provision, which we collaborated on, that would require screening for VWD prior to coverage of an invasive uterine procedure, such as a hysterectomy, in cases where there is menorrhagia.
ANDRA: We need to be very careful when we talk about legislation and how medicine should be practiced; the whole patient and the whole range of signs and symptoms should be taken into consideration. The forthcoming guidelines for the diagnosis and treatment of VWD in women will point out, among other things, that there’s more than one symptom in VWD. Let’s refer the physicians to these guidelines.
ALAN: NHF views the proposed Hemophilia Health Care Act as a step that may protect certain women from receiving hysterectomies for VWD. But we fully realize that it’s best when physicians lead a patient through a series of tests that help in making a clinical diagnosis. What other provisions are in Pennsylvania’s bill, and what’s the status of this legislation?
PAUL: This bill includes open access to all brands of clotting factors and open access to all providers and access to all state hemophilia treatment centers. This legislation was unanimously approved by the House Health and Human Services Committee last year. Unfortunately, the bill is stalled as the Pennsylvania Insurance Federation has adamantly opposed this bill. Moreover, the sponsor of the bill, Rep. Roy Baldwin, was recently defeated in his primary. What’s happening in other states?
PAUL: In Rhode Island, legislation has been offered and then pulled back at the request of the New England Hemophilia Association. The Association wants to work with the bill sponsor to further tailor the legislation to their specific needs. The sponsor is willing to do this. In California, there is support from the Hemophilia Association chapters for such a bill, but the Insurance Federation in that state made it very clear they would oppose if such a bill was offered. In Maryland, the local association has expressed interest in pushing for a Pennsylvania-style bill, but there has been no action as of yet.
There’s a 20 percent co-payment required for injectable products under Medicare Part B. In the past, a number of providers have forgiven the co-pay when they could not collect. But now, with changes to Medicare laws, it’s become harder for doctors to do that. What can be done to help Medicare patients who need these very expensive coagulation products?
ALAN: The National Hemophilia Foundation has supported a solution that would require all states to make Medigap insurance available to their Medicare and Medicaid patients. Currently, nearly half the states are mandated to do this for patients who are on Medicare because of their age, but not for disability. So we lobbied Congress to support mandating Medigap insurance for all individuals on Medicare. We’ve had support from other bleeding disorder groups and good support from the community.
PAUL: At ZLB Behring, we have a group dedicated to healthcare policy and related issues, and we’ve worked with the National Hemophilia Foundation, as well as other patient organizations, to promote access to the therapies that we manufacture. Our therapies are live-saving, life-sustaining products in most cases, so this issue is among our group’s top priorities. |