A Rite of Passage
By Paul Brayshaw, HFA Advocacy Co-Chair

In approximately eight months I will reach the lifetime cap on my health insurance plan, a private, individual policy with a $1 million benefit. In three shorts years, I have quickly exhausted $690,000.  Deplorably, this is a familiar experience confronted by many individuals throughout the bleeding disorders community.

As an insured individual with severe Hemophilia B, I administer on-demand therapy at the earliest indication of a bleed. Ordinarily, 50 percent recovery (approximately $6,000 worth per dose) is enough to respond to most problems. With the proximity of my cap, I must consider the severity of each bleeding episode before I administer an infusion. The mild joint or muscle bleeds are the most frustrating because they make it more difficult to determine the need for factor.

When I chose to leave my job in the federal government, I knew I would need to locate a health insurance policy at some point. Unfortunately, I underestimated the challenges of identifying comprehensive health coverage appropriate to my needs. My chronic dependence on health insurance has helped me understand its necessity in my life, and significantly increased my respect for insurance. It is no small feat to comprehend the health care system. With each major life change, maintaining continuous coverage of health insurance is essential. Furthermore, it is imperative to consider all the options to ensure access to insurance and clotting factor, including: state programs, employer sponsored plans, small group policies, high risk pools, guaranteed issue plans, and patient assistance programs.

The seemingly infinite variations among insurance policies offer ample opportunities to learn, as well as to be overwhelmed by the right decision. A keen insight, understanding and an appreciation of the programs and health policies are equally valuable and critical elements to ensure my care.  Through this experience, I have learned to respect the fragility of my well-being, because the physical manifestations of a bleeding disorder are only part of managing my illness.

Navigating the health insurance system is a rite of passage in the bleeding disorders community. With any health care transition, a ritual of active engagement will aid understanding and improve the available options prior to reaching an insurance cap. The threshold to any offer of employment or the purchase of a health insurance policy must be preceded by a thorough review of the health benefits and exclusions, as well as familiarity with the pattern of personal health care consumption.

To help reduce the vulnerability of the bleeding disorders population as it relates to health insurance, every member of the community is able to play a key role. When possible, educate your local, state and federal government officials and insurance commissioners about the importance of insurance for people with bleeding disorders.  Additionally, community members may offer personal, expert insight through lobby days or by writing a letter about your situation to your Member of Congress. It is up to all of us to stay informed and be the catalyst for the quality of healthcare we receive.