They’re fighting for a voice and their lives

They’re fighting for a voice and their lives

OnMarch 19, several individuals with rare, life-threatening genetic and autoimmune disorders will gather in Tallahassee to speak with members of the Florida Legislature during a special legislative day. This event comes at a time when many of these individuals are leading healthy and productive lives.

But we cannot rest easy. Many people in Florida still have concerns about maintaining access to their needed life-saving treatments. Nationwide, tens of thousands of individuals are reliant upon plasma-derived and recombinant analog therapies to treat these rare disorders, which include hemophilia and other bleeding disorders, primary immunodeficiency diseases and alpha-1 antitrypsin deficiency. Individuals afflicted with these disorders need access to the full range of plasma protein therapies to help ensure the best clinical outcomes.

As a patient suffering from the largely unknown and rare primary immunodeficiency disease, I have had to fight tooth and nail to obtain the only treatment available for my condition — a plasma protein therapy, known as intravenous immunoglobulin (IVIG). This vital therapy is very expensive to produce and can cost thousands of dollars per month for the necessary dosage needed to treat patients.

Medicare disability insurance covers only a portion of this cost. It has been said that it is cheaper to let patients like us die, rather than let physicians treat us. Last year, I lost my health coverage, after I was deemed an unnecessary expense. The lack of recognition for the plight of patients such as myself is why our group is going to the state Capitol to talk with legislators about our ongoing struggle to obtain treatments that will help us lead normal lives.

Proper treatment is essential for our quality of life. A recent survey conducted by the Immune Deficiency Foundation showed that only 19 percent of individuals rated their health as good or better a year before their diagnosis of primary immunodeficiency. After being properly diagnosed and receiving the care they need, 73 percent now rate their health as good or better.

People with rare conditions such as the ones described are tax-paying, productive citizens who want to lead normal lives. On the surface, we might appear to be healthy, but without treatment, we can die from something as simple as a common cold or a minor injury. Any limitations placed on our access to these life-saving medications could jeopardize our health and well-being and lead to needless suffering and death.

We are a small patient population, yet we need to be heard. I am hopeful that our commitment to communicating with our state leaders will yield progress and that one day we will live in a world where treatment is a guarantee rather than a privilege.

  • Jennifer Gardner is a patient with primary immunodeficiency disease who lives in West Palm Beach. Contact her at jennylarry@bellsouth.net.
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