Viral Hepatitis in Hawai‘i – Differing Perspectives
II. Perspectives on Patients
Michael Bannan, Alba Hall, Shoshana Hannemann, and Edward Ochoa
p. 6
A panel of four patients outlined their perspectives regarding thechallenges and issues related to viral hepatitis in the following general areas: awareness of the disease prior to diagnosis, stigma associated with hepatitis, significant life transitions, access to care and therapy, and the availability of resources. Patient 1, a 56-year-old man, had a long history of hepatitis B and received a liver transplant following a hepatoma. Patient 2, a 62-year-old man, had hepatitis C and has been apparently cured through therapy. Patient 3, a 52-year-old woman, is co-infected with hepatitis C and human immunodeficiency virus (HIV), and patient 4, a 52-year-old man, had a liver transplant due to hepatitis C infection. A summary of their experiences and observations are outlined in the following section.
Awareness
All four patients described a delay in the diagnosis of viral hepatitis from the time of their initial exposure, and also commented that at the time of their diagnosis they were not made aware of the seriousness of the disease or the resources available as to what should be done about it. Patient 1 was diagnosed with hepatitis B by chance as an adult after the blood bank rejected his donation, although he likely acquired the virus at birth. At the time of his initial diagnosis, he reported that his primary care physician said that the virus was dormant and did not seem concerned. As a result, the patient waited twenty-three years before seeking treatment. Patient 3 was told that she had non-A non-B hepatitis in 1975, but had no follow up and was not aware of the disease progression, or the significance of the diagnosis. She eventually learned more about hepatitis when she was evaluated for HIV after her 22 month old son was diagnosed with an AIDS-related cancer. It was not until she became involved with the Hepatitis Support Network of Hawai‘i that the full ramifications of the disease were brought to her attention.
There was a general sense among the patients that if a person felt healthy, they likely did not have an underlying active liver infection. The diagnoses and considerations for treatment generally came in fortuitous ways or through targeted education programs such as in prison or other community screenings.
Stigma
Several patients described the negative stigma associated with having hepatitis C infection, which contributed to their reluctance to deal with the infection personally, or to disclose their histories to health care practitioners. Patient 2 was named a hepatitis C ‘vector’ while serving a sentence in the Federal Detention Center in Honolulu and was subsequently quarantined in a single cell for three months to allay the fears of other inmates. Patient 3 has been infected for so long that she no longer pays attention to any stigma associated with either hepatitis or HIV and has actually not noticed a stigma associated with HCV; however as a person with AIDS and the mother of two children born with the HIV virus, she is well acquainted with the stigma associated with HIV despite education campaigns funded through government programs such as the Ryan White Act and community foundations. In reference to the perceived stigma on people with either or both viruses, Patient 3 emphasized that it does not matter how someone contracted the virus(es), and that it is counterproductive to talk about what we could have, would have, or should have done to prevent infection. She said that “knowing why does not change the fact that it is,” and has been proactive about moving beyond other people’s perceptions and, most importantly, “the limitations we place upon ourselves.” Stigmata can often be used as an excuse for inaction although it is not a useful one in dealing with the problems faced when managing these evolving epidemics.
Life Transitions
Several patients noted that they successfully transitioned from injection drug use and criminal behavior in their teens to become productive adults with close relationships with families and friends. For many, learning about hepatitis and going through the treatment programs were important in transitioning their life through recognition of the importance of altering behavior, the seriousness of the problems, and the people who came together to support them. They were often proud of their efforts and successes, which they were willing and anxious to share with others. They are all now involved in community outreach programs helping others with hepatitis and related support systems.
Access to Care and Treatment
Most patients were not aware of the recent advances in treatment for hepatitis B and C when they were diagnosed. They often found out about treatment options through educational outreach programs and the media. Once they were tested or screened and found to have hepatitis, it was not always possible to find a physician with knowledge and willingness to treat them. According to the patients, some of the primary care doctors they saw seemed to know little about current treatments with interferons and other potentially toxic medications and their side effects. Referral to a specialist or specialty clinic was often difficult due to long wait lists. Insurance coverage was deemed a significant issue in that many patients didn’t qualify for disability as they seemed relatively healthy, or co-payments were prohibitive and discouraged medical evaluation and therapy. Even vaccines to prevent HAV or HBV were at times denied by insurance companies.
Patients noted the mental and personal challenges they faced in making decisions about their care. Although most patients trusted their physicians and followed their advice, not all of the patients did; patient 3 is well aware of the pros and cons regarding HCV treatment, but feels that in her case the benefits do not outweigh the risks, as she perceives the treatment to be extremely debilitating. Her physician agrees with her decision. The personal decisions to obtain treatment or apply for a transplant are critical and should be supported by healthcare providers through education regarding options available to patients. Undergoing Therapy
The panel of four patients discussed the problems they had with different treatments, including anemia, leucopenia, thrombocytopenia, depression, and fatigue, with symptoms varying among panel participants. Patient 2 noted minimal physical side effects during interferon treatment, but reported short term memory loss that affected his ability to participate in local theater and stage productions temporarily, although the memory loss resolved completely after the treatment ended successfully and his virus was eventually deemed ‘un-detectable.’
Patients 1 and 4 have had successful liver transplants, and recounted the challenges they had in getting livers. Patient 1 had a liver transplant over six years ago following unsuccessful eradication of a hepatoma, and is doing well, although must be careful with side effects and problems associated with an immunosuppressive treatment regimen. Patient 4 was initially rejected for a liver transplant, in part due to his history of injection drug use and incarceration. He felt at the time that he had received a death sentence and had little hope of surviving more than a few months due to vascular changes in his lungs which confined him to a wheelchair and constant oxygen therapy. Through the personal efforts of his physician in Hawai‘i he was able to receive a liver more than two years ago, although he has had complications due to an infected stent, chronic pain, and emotional duress due to prior history of sociopathic behaviors. He has nevertheless been a strong advocate for the hepatitis in the community, has spent valuable time with his family and children, and has even been able to run local 10K races.
Available Resources
The Hepatitis Support Network of Hawai‘i (HSNH) has helped to provide resources that assist patients in responding to the challenges they face as a result of hepatitis. Community foundations and advocates such as HSNH are vital to providing outreach and education programs to schools, prisons, faith-based organizations, immigrant populations, methadone and drug rehabilitation programs, homeless populations, clinicians, and patients. Increased media attention in the form of articles in newspapers and magazines highlighting the ‘Silent Epidemic’ and identifying the risk factors and need for testing as well as educational campaigns with posters, brochures, and knowledgeable sales forces sponsored by pharmaceutical companies have also been useful in disseminating information and supporting advocacy services.
Patient 1 is grateful that he is able to turn his experiences with hepatitis B into something positive by serving as a ‘buddy,’ or mentor, in the American Liver Foundation’s Liver Buddies Program, which is designed to help those who have been diagnosed with liver disease by putting them in contact with others to provide moral support and encouragement. Patient 3 said that educating the public about HBV and HCV should be important goals for healthcare practitioners, as well as education about the viruses and available treatments. She believes that it is imperative that patients become proactive in their own treatment plans and that consumers must not be intimidated by health care providers. She thinks that patients are entitled to ask questions and receive qualified answers, as ultimately it is the patient who makes the final decision regarding his or her treatment. The ability to make better, more informed choices with respect to health care engenders a sense of empowerment which contributes to an overall sense of well being.
One concern brought to light is the way in which these viruses affect the families of those infected, especially in the case of patient 3 who was not only co-infected, but also the primary caregiver for two children born with HIV. She made the comment that a parent’s mortality is far more frightening to a child than their own. While focusing on a cure is important, patient 3 suggested that emphasis should also be placed on living successfully with the viruses and helping families to cope with the realities of HCV. Patient 3 also mentioned that while the existing social services programs and resources are valuable assets, the system is set up in such a way that it can leave one feeling trapped. Once in the system, especially while trying to ease out of it, life, more than ever, must be organized by priority, with creative financing at the top of the list. Frustrations in transitioning back into the workforce with little or no direction following illness and treatment were discussed. The transition from incarceration to society is often difficult as well, especially with an ongoing viral infection.
The general consensus from the panel of patients was that efforts to educate the public about hepatitis B and C are improving but that outreach efforts and lowering thresholds to accessing care and testing are important for the future.
