September 15, 2016 - Thanks to the courage and persistence of Legal Aid client Vickie Goldstein, Florida health officials have changed the hepatitis C drug policy for Medicaid. According to the Florida Department of Health, an estimated 300,000 Floridians are infected with Hepatitis C, with approximately 2,000 new cases occurring each year. Despite the growing number of Hepatitis C cases and the fact that a once incurable disease now has a cure rate above 90%, patients were being denied the medication because they were deemed not “sick enough.” If left untreated the viral infection can lead to liver failure, cancer or death.
Hepatitis C patient’s hepatic fibrosis level, or liver scarring, is tested to determine the severity of the disease. The level measures zero to four. Zero having little or no scarring and level four having severe liver disease. Patients were being denied the costly medicine until they reached a fibrosis level of three or four. Patients often have such severe liver damage in stage four that they require a transplant. Patients appeal and are denied again, but the state usually approves the drug during an appeals hearing, a process that can take months. Vickie Goldstein, however, did not want to just appeal to get the medicine for herself, she wanted a policy change so that all Hepatitis C patients have access to the curative medicine before they reach the late stages of the disease. Vickie states, “If I had Stage 1 breast cancer, would they say wait until Stage 3 or 4 to do anything about it? No. And this is a cure.”
Goldstein teamed with Legal Aid Society’s Coverage to Care attorney Vicki Tucci Krusel, Florida Legal Services and the National Health Law Program to challenge the Florida Agency for Health Care Administration’s policies stating they violated the patient rights under the Medicaid Act.
Molina Healthcare, which manages some Medicaid patients in Florida’s system, denied Goldstein access to Viekira Pak, a direct-acting antiretroviral drug used to treat Hepatitis C, stating it was not “medically necessary.” The drugs, which have over a 90% cure rate, are highly expensive. The 12 week treatment can cost between $24,000 - $31,000 a month. However, a liver transplant can cost upwards of $500,000, plus follow-up appointments and medications. The U. S. system imposes few limits on what drug makers can charge. In turn, many states, agencies and health plans, worried about a huge influx of costs, impose significant restrictions on who can get the medication and when. However, Vickie Goldstein was not going to give up. Vicki Tucci Krusel states “She’s a woman of great courage. She kept pushing for her health needs and her rights. She wasn’t backing down.”
All of their efforts paid off. Effective June 1, Florida’s Agency for Health Care Administration discontinued the requirement for evidence of hepatic fibrosis before approving the drugs. Vicki and all the Medicaid patients like her will no longer have to have fibrosis levels of three or four to receive their medication to be cured of this disease. As Bob Bertisch states, “Palm Beach County Medicaid recipients will no longer hit a barrier when trying to access life-saving and curative hepatitis C treatment. Our client’s life and the lives of many others will be improved by these corrective steps.”