Statement of David Marks, West Coast Director, Hepatitis C Action Movement,
Saratoga Springs, New York

On behalf of the Hepatitis C Action Movement, I would like to express my concerns with the Social Security Administration's current standing on awarding disability benefits on Hepatitis C related claims.

Because there was no effective method for detecting the Hepatitis C Virus until 1992, the severity of this epidemic is still greatly under-estimated and the US government has yet to provide adequate relief to those who are suffering from this virus. We are hopeful that Commissioner Barnhart will lead the Social Security Administration into the 21st Century and the visions of this new administration will include relief for the growing number of people who are only now being diagnosed with a virus contracted a quarter century ago.

When the HIV epidemic struck America in the 1980s, the Social Security Administration realized the burden having a potentially fatal virus has on the body and updated the disability impairment listings to include HIV. However, since the SSA does not yet recognize Hepatitis C, a person suffering from HCV is not judged by the same standards. The policy of not awarding disability benefits for HCV victims until they are in end stage liver failure is the equivalent of waiting until a person with HIV is dying of end stage pneumonia before approving their disability claim. The number of people infected with HCV out numbers those with HIV nearly 5 to 1 and the number of deaths from HCV will triple in the next 5 years, out numbering that of AIDS. Just as the SSA was quick to adapt the system to include the needs of a new generation when faced with the HIV epidemic, the current administration must once again adapt to include the needs of those with HCV.

The current position adopted by the Social Security Administration is to review all Hepatitis C related disability claims based on the guidelines set forth under Section 5.05 of the List of Impairments titled "Chronic Liver Disease." However, the guidelines under this heading were not written with the Hepatitis C infection in mind and do not consider the myriad of disabling symptoms which accompany the Hepatitis C infection. These guidelines do not adequately reflect the current needs of the five million known American's who are inflicted with this insidious virus.

HCV has many disabling effects in addition to chronic liver failure, which are not currently recognized by the SSA. The Hepatitis C virus lives in the body for 10 - 20 years before showing any outward symptoms, so the infected go undiagnosed for decades. However, during these years, the liver becomes an unwilling host for the virus and the liver deteriorates. Once obvious symptoms begin to appear, the damage is irreversible and quite debilitating. Yet, the end stage liver failure required by the SSA to qualify for disability claims may not occur for several years after the virus begins to actively destroy the liver and kidneys.

The liver is the body's largest internal organ and provides many critical functions needed to sustain a healthy lifestyle and when the HCV attacks the liver, performing everyday tasks becomes difficult. However, the Hepatitis C virus affects more than just the liver. Symptoms a person with HCV may suffer before qualifying for Social Security disability include: Extreme debilitating fatigue, memory loss, confusion, nausea, painful swollen muscles and joints, depression, anxiety, numb and tingling limbs, enlarged spleen, inflammation or bleeding in the stomach and esophagus and heptocellular carcinoma.

The result of the current SSA review policy leaves people too sick to work and not sick enough to receive assistance. Currently, there are people infected with HCV on the liver transplant list that still do not meet the strict criteria under the current SSA guidelines. Because most health insurance policies are contingent upon their employment, when their job is lost, so are their health benefits. The current cost of treatment for Hepatitis C is $32,000 a year as there are no generic options available. The unfortunate result is the choice between spending their life savings on medicine or life itself.

Even when the HCV patient is able to continue their health insurance, the side effects of the treatment are often more severe than the infection itself. The side effects of the Interferon combination therapy are similar to chemotherapy and include nausea, fever, insomnia, swollen and painful muscles and joints, depression, confusion, thyroid disease and flu-like symptoms, just to name the most common. Working a full time job while undergoing the 12 to 36 month regiment is nearly impossible.

This epidemic can not continue to be ignored any longer. It is time that the Social Security Administration realizes the devastating effects of their policy and updates their current policy to include the 5 million Americans infected with HCV. We are hopeful the Social Security Administration under the new vision of Commissioner Barnhart, will take on the new challenges facing today and will be granted the proper resources to be able to meet their responsibilities to the 5 million Americans infected with HCV.

Respectfully,

David Marks
West Coast Director