Elizabeth G. TaylorExecutive Director of the National Health Law Program (NHeLP)
- Imagine you are diagnosed with cancer. Your doctor tells you that your cancer is completely curable. But unfortunately, the cure is very expensive. It is so expensive that your insurance won’t pay for the cure until your cancer has advanced to stage three. You will have to suffer for months — possibly even years — before you have a chance at a cure. You may experience serious symptoms while you wait for a cure — fatigue, organ damage and depression. Your insurance plan may pay for treatments that ameliorate some of your symptoms, but they will not cure the underlying disease until you get very, very sick. And when you do get the cure, it won’t undo a number of problems that you developed along the way. This scenario sounds unfair.
But this is nearly the exact scenario that states are imposing on their poorest residents. A series of new, breakthrough treatments for Hepatitis C was approved by the FDA starting in late 2013. But the cost of treatment was set very high, more than $80,000 for a course of treatment. Despite outrage from patients and advocates, drug companies continued charging thousands of dollars for these treatments. While the treatments are highly effective, the high cost put a cure out of reach for most people.
Meanwhile, state Medicaid programs — the health care safety net that is supposed to ensure that the poorest Americans — have fallen far short. This is especially important, since, unlike cancer, Hepatitis C is an infectious disease. After years of declining infection rates, Hepatitis C infectious rates are rising.
Late last year the Senate Finance Committee issued a report finding that pharmaceutical companies, such as Gilead Sciences, were working to maximize revenue of new Hepatitis C drugs, despite public claims of striving to help the largest number of patients possible. The Committee also found that half of state Medicaid programs were only providing curative treatment for Hepatitis C to those who are very sick, despite the fact that the standard of care for this serious, chronic, and communicable disease calls for treatment for anyone who is infected with the disease.
These limitations are not only unconscionable, but they are also illegal. Last November the federal agency that oversees the Medicaid program made clear that states must make treatment available to all beneficiaries when it is medically necessary. Last month, a federal court in Washington State agreed with the agency, and issued a preliminary injunction ordering the State to provide treatment to all Medicaid beneficiaries regardless of disease severity.
Since the federal guidance was issued, a few states have made voluntary changes to their policies. In April, New York voluntarily changed its policy upon the recommendation of its Drug Utilization Review Board. Just this week, Delaware announced that it will modify its coverage policies in order to avoid being sued. Earlier in the month, Florida announced that it is changing its policy to ensure that all Medicaid beneficiaries with Hepatitis C receive treatment. Florida health officials announced the changes after the National Health Law Program (NHeLP), Florida Legal Services and the Legal Aid Society of Palm Beach County successfullyadvocated on behalf of a Florida woman who had been repeatedly denied treatment, despite her worsening condition, because her Medicaid plan determined that treatment was not medically necessary. But as NHeLP and other organizations pointed out, federal law requires that Medicaid patients receive treatment for Hepatitis C promptly, not after they fall deathly ill. No patient, Medicaid enrollee or otherwise, should be forced to suffer and become sicker before receiving quality health care. These changes take important steps to ensure that Medicaid beneficiaries around the country have timely access to treatment that can cure their disease.
There are still many more state Medicaid programs that are making treatment inaccessible for thousands of low-income Americans who are infected with Hepatitis C. State Medicaid programs must take action to ensure curative treatments are made available to low-income individuals and underserved communities of their states. Congress also has a role to play by making the cost of these drugs more affordable for the taxpayers who ultimately bear the cost of these life-saving treatments. Drug companies must be held accountable to ensure that treatment is truly accessible to those who need it most.
Making a cure available to all is not only the right thing to do, it is necessary to comply with the law, and to prevent the spread of Hepatitis C.
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