Will National Healthcare Reform Replace the Need for The Hemophilia Standards of Care Act in Pennsylvania?
By George Levy
Everyone is aware of the ongoing debate in the U.S. Congress surrounding the issue of health insurance reform. Several bills were introduced in the U.S. House of Representatives and the Senate. As we write this, we do not know what form the national legislation will take and when various provisions of the final legislation will go into effect. It is reasonable to assume that some aspects of national health insurance reform will benefit persons with hemophilia. For example, insurance carriers may no longer be able to discriminate against persons with pre-existing health conditions, including hemophilia and other bleeding disorders (although we fear that provision will not be in force soon enough).
Some may ask the following questions:
• Will national healthcare reform solve the current “access to care” problems for persons with hemophilia in Pennsylvania?
• Do residents of Pennsylvania really need to worry about The Hemophilia Standards of Care Act if we can look forward to national health insurance reform?
• If I am now healthy and I don’t have health insurance troubles, do I need to worry about passing legislation in Pennsylvania?
For the following reasons, we emphasize that national health insurance reform will not solve the problems we presently experience in Pennsylvania concerning access to healthcare, nor will national legislation address the needs of persons with hemophilia in the Commonwealth.
National health insurance reform may allow people without insurance to purchase a private or possibly a “public option” policy focused on providing cost-effective healthcare. This could be a “managed care” plan such as an HMO. That will provide some coverage, but would it cover our patient needs in an environment where we already experience many problems with HMOs and other insurance plans? An insurance policy provided under the auspices of national health insurance reform may be no different from insurance policies we currently own in the specifics of coverage for hemophilia. Therefore, if we have current problems with (1) access to hemophilia programs, (2) access to the out-patient laboratories at Treatment Centers, (3) access to specific brands of clotting factor, and (4) access to high quality home care companies, including home nursing services — all of which are essential to our well being — then we should expect the same set of troubles to continue even under national health insurance reform.
Thus, under national reform we as patients may be assured of guaranteed access to health insurance policies, but that doesn’t address our problems. We must ensure that any health insurance policy we purchase covers hemophilia treatment in a comprehensive manner that meets our specific patient needs. National healthcare legislation will likely fail at addressing the specific needs of persons with complex lifelong medical conditions. The stated goal of national legislation is to provide uninsured persons with coverage at a reasonable cost; the goal of HB 620 is to provide persons with hemophilia insurance coverage specific to the needs of persons with a complex, potentially life-threatening disease, and to do so at no additional cost to insurance companies or the Commonwealth.
We are a nation of individual states, and accordingly, it is up to the citizens of each state to advocate for specific healthcare legislation or reform to serve the needs of particular groups of individuals. We can never assume the federal government will protect the ongoing healthcare needs of persons with hemophilia, because hemophilia is a rare disease. Therefore, we must act now to preserve access to essential healthcare for citizens of Pennsylvania affected by hemophilia. We have insurance issues specific to Pennsylvania, a Commonwealth entity with its own unique insurance regulations. Accordingly, we have outlined a medical standard of care in HB 620. This ACT would codify what we need to achieve optimal health outcomes.
The news media has reported that health insurance costs will rise in 2010 by as much as 15%, which is unconscionable. We believe this means extraordinary users of insurance benefits, including persons with hemophilia, are at risk for a cutback in coverage and services. We need the protection of a codified medical standard of care that will preserve access for citizens of Pennsylvania with hemophilia to the important components of effective healthcare — our blood-clotting medicine, trained specialists in hemophilia care, specialized laboratories and home supportive services that promote our independence. Without the protection afforded by the Hemophilia Standards of Care Act, we expect our problems with access to essential healthcare in Pennsylvania not only to continue, but worsen, even with the passage of national healthcare reform. |
