Fatigue and pain can be disabling. Many Hepatitis C patients seek Social Security disability benefits claiming fatigue and pain of disabling severity. Since fatigue and pain are largely subjective and generally not measurable by objective medical tests, this presents a challenge for those evaluating these claims – and for us as their legal representatives.
Not only are fatigue and pain not provable by objective medical measures, but studies in Oregon and in Europe in 1999 have shown that complaints of fatigue and musculoskeletal pain in Hepatitis C patients do not correlate to the severity of liver disease or to laboratory values often obtained from hepatitis patients.* Both the Oregonian and the European researchers agreed that it is unknown how the hepatitis C virus (HCV) causes fatigue and that further research in this area is needed.
Hepatitis C sufferers are often stigmatized by the fact that the most common source of new HCV infections is intravenous drug use. However, hundreds of thousands of cases now progressing can be traced to blood transfusions to unsuspecting patients prior to 1992 when more reliable HCV tests became available, not as a result of “life style choices.”
According to the Centers for Disease Control (CDC), chronic Hepatitis C (when the infection persists 6 months or more) develops in 75 to 85 percent of persons infected with the HVC. Fatigue is one of the most common clinical symptoms of chronic Hepatitis C, according to both the CDC and Harrison’s Principles of Internal Medicine, the “bible” of internal medicine. Persistent inflammation may also result in poor stamina and difficulty concentrating.
The Oregon study* showed a highly significant association between musculoskeletal pain, fatigue and the presence of hepatitis C infection. (The principal author cautions that extrahepatic manifestations of the disease are being intensively researched and are subject to differing interpretations.)
The CDC notes, in addition to fatigue, that symptoms may also include abdominal pain, loss of appetite, intermittent nausea and vomiting, as well as muscle and joint pains.
As early as 1993, the Quarterly Journal of Medicine reported that among hepatitis C patients, the most common complaint was of fatigue, but there was little correlation between serum aminotransferase concentrations and symptoms.
Elevated aminotransferase concentrations (specifically, Alanine [ALT, formerly known as SGPT] and Aspartate [AST; formerly known as SGOT]) in the blood may indicate increased liver cell death. However, only slightly elevated or even normal ALT levels may be present in persons with end stage cirrhosis and almost no remaining liver function. Similarly, persons with chronic hepatitis C and end stage liver disease may have only slightly elevated or normal AST levels. These tests, then, do not test for specific liver functions, nor do they correlate with the severity of liver disease.
Other enzyme levels may indicate the possibility of bile duct disease. Of course, bilirubin and albumin levels and prothombin (blood clotting) time are also indicators of possible liver damage or dysfunction.
Shortly after hepatitis C was discovered in 1989, the first “Enzyme Linked Immunosorbent Assay (ELISA I) was developed to test for HCV antibody, but it produced many false-positive results. The more sensitive ELISA II and ELISA III followed. The latter is now used to test blood supplies and to determine if a patient has had hepatitis C, but alone does not indicate whether a person currently has hepatitis C. A single negative ELISA does not mean that a person has not been infected with HCV.
Polymerase Chain Reaction (PCR) is currently the most reliable method for quantifying the level of HCV in serum and may detect as few as 100 virus particles per milliliter of blood. However, viral load does not correlate with the severity of hepatitis C. (This contrasts with other chronic viral illnesses such as HIV and hepatitis B, where the viral load correlates well with disease outcome.) Also, serum levels of HCV RNA can vary spontaneously three- to ten-fold over time. A single negative PCR test does not prove a person is not infected.
A liver biopsy is not necessary for diagnosis of hepatitis C, but it will help in grading its severity, indicating the stage of fibrosis and revealing permanent damage to the liver’s architecture. Chronic hepatitis confirmed by liver biopsy, however, will make it easier for your patient to meet the criteria of Social Security Listing 5.05 for chronic liver disease.
In short, the hepatitis C sufferer will face challenges “from the get-go” objectively verifying the severity of his/her symptom-related limitations since each test has inherent limitations. Moreover, as Harrison’s Principles of Internal Medicine cautions:
“The diversity of liver functions and the disruption of these functions by the spectrum of disorders that may affect the liver function preclude the use of any single test as a reliable measure of overall liver function.” **
This maze of diagnostic complexities makes treatment tricky for doctors. Even more so, these incongruous details compound the challenge of presenting a clear argument for disability before a Social Security judge. Also, the criteria for meeting the Listings are so high a patient must be on the verge of needing a liver transplant. Most Hepatitis C patients will have to prove their Hepatitis C-related pain and fatigue are disabling.
The claim of disabling pain and fatigue will be based largely on the judge’s credibility evaluation. The stigma of Hepatitis C may be two strikes against the patient.
As treating doctor, your chart notes are important evidence. If your Hepatitis C patient reports fatigue and musculoskeletal aches and pains, your report noting these symptoms of Hepatitis C will be helpful. If these symptoms seem to impair your patient’s ability to function normally in a way which would make persisting in full-time work difficult if not impossible, your notes recording these observations will be vital corroborating evidence.
This article was prepared by Arthur W. Stevens III and Peter E. Yeager.
We gratefully acknowledge Ann W. Cook, Esq., of Silverdale, WA. This article was based on her presentation for the National Organization of Social Security Claimants’ Representatives (NOSSCR), October 19, 2000, Seattle, WA.
* Barkhuisen, Andre MD, et al. “Musculoskeletal Pain and Fatigue Are Associated with Hepatitis C.” The American Journal of Gastro-enterology. Vol. 94: No. 5, 1999. Pages 1355 & 1358; Goh, J, et al. “Fatigue Does Not Correlate with the Degree of Hepatitis or the Presence of Autoimmune Disorders in Chronic Hepatitis C Infection.” European Journal of Gastroenterology and Hepatology. 1999: 11:837.
** Fauci, et al. Harrison’s Principles of Internal Medicine. Fourteenth Edition. McGraw-Hill, 1998. Page 1663.