Hepatitis C: We’re Fighting Stigma and Providing a Cure
Beth came to Harbor Care having recently received a diagnosis of Hepatitis C, or hep C, as it is often called.
Her case had been reported to the state, as part of the contact tracing for infectious diseases. Although testing is the first step toward recovery, many hep C victims don’t realize they carry the virus, according to Jay Gupta, Harbor Care’s Director of Pharmacy. He explains that, “because they mistakenly think hep C is incurable, they feel there’s no benefit to getting tested.”
Along with misunderstandings about the virus itself, hep C also carries a heavy burden of stigma. Daniel Winterbottom, in his article on HepatitisC.net says, “I often heard friends discuss the subject unaware I was positive and if they knew, their feelings about/towards me would change.” Fear also arises over transmissibility: “Exaggerated fear of transmission in patients...can be a major cause of social isolation and reduced intimacy in relationships,” according to David Rowlands in PharmaPhorum.
Studies show a reluctance to get tested for diseases that are heavily stigmatized. According to the online journal Science, “If people fear stigma, they will be reluctant to get tested, disclose they have symptoms, and seek care.”
The clinical staff at Harbor Care Health and Wellness Center are working hard to combat stigma, which keeps their patients from finding out their status and receiving treatment. Dr. Marcia Tanur, Harbor Care’s Medication-assisted Treatment (MAT) Physician Provider, says, “stigma is where the real harm comes from for my patients.”
Beth needed a happily-ever-after.
“We are striving for low threshold and no-stigma care at every step through our integrated health care system; we re- train and innovate with organizations like the National Academy of Medicine to reduce our own layers of stigma.”
The fact that Beth broke through her own layers of reluctance and fear put her on a path to recovery. Registered Nurse Sue Carty says, “I’m delighted each time a hep C patient like Beth comes in for treatment, because so many others suffer needlessly.”
Nurse Sue ran tests and found that Beth had a very high viral load -- 7.5 million IU/mL, or over 21 times more than the median of roughly 350,000 IU/mL. Provider Michelle LeClerc, ARNP, then performed a FibroScan to determine how much damage this high viral load had done to her new patient’s liver.
Michelle was dismayed to find that Beth’s fibrosis score was 60 kPa. Fibrosis, or scarring, is measured in kilopascals (kPa). Typical results for an undamaged liver are between 2 and 6 kPa, and the highest possible result is 75 kPa. At 60 kPa, Beth’s liver damage was extreme.
Concerned, her provider tested again a week later and found that Beth’s fibrosis score had risen to 68, indicating that her liver was deteriorating rapidly. In the past, this would have been dire news and Beth’s prognosis would be imminent organ failure and the need for dialysis. Fortunately, there is an anti-viral medication on the market that can cure hep C, even in this advanced stage of the disease. Michelle wrote a prescription for this medication, and sent it over to Harbor Care’s pharmacy to be filled.
Beth was ready for her happily-ever-after moment, but it wouldn’t come immediately. Although hep C can be cured in 90 percent of cases with direct-acting antivirals, these medications need to be administered EVERY DAY without fail for eight to twelve weeks – the exact length of time depending on the type of hep C that is being treated. Not every patient with hep C can maintain such a rigorous regimen. The high cost of these medications is also a barrier to many - something Harbor Care helps address through its on-site pharmacy. Our pharmacy staff are adept at working with insurance and patient assistance programs to greatly reduce the cost of treatment.
Peter Kelleher, President and CEO of Harbor Care, understands how difficult the cure can be: “Hepatitis C is a very serious, life-threatening issue. My own brother died from it. The cure is very expensive, and the treatment requires a person to take the medicine take daily for three months...faithfully.”
Nurse Sue Carty keeps information on hep C close at hand for her patients.
This personal understanding of the challenges that accompany a hep C diagnosis at the highest levels of leadership motivates the organization’s approach to treatment. Harbor Care works hard to make sure that hep C patients prescribed direct acting antivirals will be able to afford them...and maintain the lengthy daily regimen without fail.
Dr. Tanur says,
Because Harbor Care offers wrap-around supports, and is a Patient Centered Medical Home, we are equipped to provide hep-C sufferers easy access to multiple sources of support – behavioral health, substance use recovery treatment, and a host of other services. Patients receive simultaneous healing of multiple conditions, which results in greater retention and success in treatment.
In time, Beth completed her course of medication, thanks to the support of her Harbor Care treatment team. Her provider declared her free of the hep C virus on a follow-up visit. Because of the serious damage to Beth’s liver, she will return for monthly check-ups with her team at Harbor Care for the next year. hep C is an infectious disease and sexual contact is one of the ways it can spread; her provider made sure that Beth’s partner got tested for hep C so treatment could be arranged if needed.
The cooperation of the pharmacist, nurse, MAT provider, and primary care provider working together in Beth’s treatment is an example of the extra care and assistance patients receive in a Patient Centered Medical Home, such as Harbor Care. The Institute for Healthcare Improvement (IHI) has a model to improve healthcare called the “Triple Aim.”
The Triple Aim has three pillars:
1. Improving the patient experience of care (including quality and satisfaction)
2. Improving the health of populations
3. Reducing the per capita cost of health care
When many for-profit organizations would have brushed their hands and moved on to more well-heeled, or better insured clientele, staff at Harbor Care didn’t stop working until Beth received and completed the treatment she needed.
This is how Harbor Care improves patient experience, improves the health of our local community, and reduces the barriers to healthcare. Every day, people like Beth remind us why this is important.