Dying for Help

Dying for Help is a documentary that puts a face on IVIG and its lifesaving benefits. It shows the challenges that patients face in being diagnosed with a rare disease, prescribed a therapy that will treat their disease, and how insurance companies determine if patients will receive access to IVIG. Decisions on how to treat these patients have been taken out of the hands of the treating physician by denying coverage of IVIG when deeming this lifesaving therapy as “medically not necessary” or charging thousands of dollars in out of pocket copayments that patients cannot afford to pay.

The battle to fix the access problems begins in Washington, DC where legislation is introduced by Representatives Steve Israel (D-NJ) and Kevin Brady (R-TX) to increase reimbursement for IVIG under the Medicare program, since the problems with access began when reimbursement was cut under Medicare in 2005. The problems with reimbursement under Medicare soon become a much greater problem as private payers decrease reimbursement, increase denials of coverage to all patients who need IVIG, and increase out-of-pocket costs to the patients to a level that becomes unaffordable. Although, health care reform passed, the voice of the patients with rare and chronic diseases have not been heard in Washington, DC and the insurance problems that patients who rely on IVIG are having have not been resolved and therefore the focus on policy reform moves to the states beginning in Nebraska where a legislator has personally experienced access problems.

What is IVIG?

Intravenous immune globulin therapy (IVIG) is a lifesaving treatment for patients with idiopathic thrombocytopenic purpura, primary immune deficiency diseases, neuropathies, myositis, myasthenia gravis, cancer, and a number of other diseases. While this blood-derived treatment strengthens immune systems in primary immune deficient patients, certain types of autoimmune diseases, cancers and organ transplantations, as well as prevents paralysis in some autoimmune diseases and neuropathies, access to IVIG has been eliminated for many patients due to insurance coverage denials, reimbursement, shifting the cost of the therapy to the patient by charging coinsurance, and other access problems facing this community.

Immune globulin is made from pooled plasma taken from thousands of donors. It holds antibodies against a broad spectrum of bacteria and viruses. It is used primarily to treat three categories of illnesses: primary immunodeficiencies, autoimmune neuromuscular disorders, and certain rheumatologic conditions. Immune globulin is most commonly delivered through a needle placed into your vein (intravenously). Immune globulin can also be given under the skin (subcutaneously) and through a muscle (intramuscular).