It's Time for a Patient's Bill of Rights

Who will stand up for the rights of patients when specialty pharmacy benefit decisions based on cost savings and profits negatively affect patient care?

The United States has many organizations and laws to protect its citizens, such as the Office for Civil Rights, the Office of Human Rights, the Equal Employment Opportunity Commission, the Americans with Disabilities Act, and the Office of Fair Housing and Equal Opportunity. It may be time for one more now—the Office of Patients’ Rights. This office will need to protect patients from discrimination and ensure that the Patient’s Bill of Rights included in the 2010 Affordable Care Act (ACA) is enforced. The ACA does have a provision for an internal appeal process as well as an outside review, but it does not allow a patient to hold their health plan accountable for harm done.

Last week, I met with state Medicaid officials and discussed their new managed Medicaid program. It seems that 2 of the plans offered have a restricted specialty pharmacy program, which mandates the patient use an out-of-state specialty pharmacy that, ironically, is owned by the pharmacy benefit manager (PBM) itself. In one case, a patient with HIV receiving antiviral therapy for the past 5 years while under our care with excellent compliance and a medication possession ratio of 98% was required to transfer services to another provider. This particular mail order specialty pharmacy made multiple mistakes that delayed the processing of the prescriptions, only to find that their shipping courier could not deliver to the patient because they lived in a hollow in a rural part of the state. We pleaded with the specialty pharmacy for an override, had the physician’s office call and get involved, only to be told that the patient’s pharmacy benefits do not allow for an override. The patient went without their lifesaving antiviral therapy for more than 30 days. Although unbelievable, this is a true example. What does an appeal do for this patient?

It is one thing for a PBM in search of shareholder profits to mandate the use of its own specialty pharmacy regardless of a patient’s continuity of care, but when you start seeing commercial plans experimenting with the same actions, it is cause for alarm. If a PBM develops a best-in-class specialty pharmacy program that delivers so many things and is so much better than other existing specialty pharmacies, then why does participation in it need to be mandatory? If it’s free and part of a patient’s established benefits, do you really think the world’s most educated consumers (Americans) will not select it? The fact of the matter is, if the specialty program were not mandatory, it could not maximize profits at any expense.

The other disturbing fact about restricted specialty pharmacy programs that has come to light is discrimination against patients. If a patient has diabetes, they get one level of service, but if they have recalcitrant psoriasis and need a biologic for treatment, the patient then gets special benefits and more services. How can health plans ethically support this dual level of care solely based on the cost of medication? How does the largest payer of health care, our federal government, allow this to be legal? How does the ACA not guarantee that all patients receive the same services regardless of what medicine is prescribed? If the American people are now consumers and buying their own coverage on state health care exchanges, why should they not be protected by the Bureau of Consumer Protection and the Federal Trade Commission?

Today, health plans are not held accountable for harm. Today, there is no recourse when an HIV-infected patient does not receive their medication. Today, a hemophiliac patient can wind up in the hospital because FedEx could not deliver. Today, profits and shareholder interests come before patient care.

Like Dr. Martin Luther King said, “I have a dream…” and it is that one day all patients will be treated equally. One day it will not matter if you are injecting insulin or interferon—patients will be treated with the same level of care. One day health plans and PBMs will put patients first. One day all patients (consumers) will wake up and demand their rights back. This is my dream, this is my passion, and this is why I believe a true specialty pharmacy earns its patients. SPT

About the Author

Nicholas Karalis, RPh, is president of the board at Community Specialty Pharmacy Network and a pharmacist with Elwyn Specialty Care.