Restricting Access to Medicines At the Expense of Patients Warrants a Candid Conversation

Restricting Access to Medicines At the Expense of Patients Warrants a Candid Conversation

06.23.14 | By John Castellani

It has become increasingly clear in recent weeks that far too many patients simply cannot access innovative medicines that help treat costly chronic diseases. While more Americans now have health care coverage under the Affordable Care Act (ACA), they still face insurmountable barriers to access that hinder our collective efforts to prevent, manage, and cure these conditions. High out-of-pocket costs for medicines on the new exchanges are straining patients’ ability to pay or adhere to their treatments, which in some cases means individuals are going without their medication altogether. This is bad for patients and it creates short and long-term challenges for our nation.

Recent data show a substantial number of plans require high cost-sharing for all medicines in several classes; that means all medicines – including generics when available – to treat a specific disease or condition. Patients on exchange plans with debilitating conditions including cancer, HIV/AIDS, bipolar disorder, multiple sclerosis, and diabetes are experiencing sticker shock at the pharmacy counter due to the plans’ cost-sharing structure. Given that medicines help improve, extend, and even save lives – often preventing the need for repeat hospital visits and expensive complications – the existing insurance model is incentivizing the wrong end of care at the expense of patients. We should be focused on keeping people healthy and helping them to manage their chronic conditions, not waiting for them to get sick and end up in the hospital.

To gain a more thorough understanding of exactly how patients’ lives are affected by these high out-of-pocket costs for needed treatments, we posed the following question on PhRMA’s Conversations forum:

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

Like many of the questions that we’ve hosted over the past year, the responses illustrate the need to ensure patients remain at the center of everything we do. As the Colon Cancer Alliance noted, some cancer patients are facing a mountain of debt that is only growing as their condition worsens, while others are dependent on foundations to pay for their treatments and worry about running out of funding. The burden of their fight against the disease is exasperated by the emotional toll of worrying about access to treatments.

HIV/AIDS patients are dealing with similar barriers due to high out-of-pocket costs in the exchanges. “People aren’t picking up their medications, and they’re going off their medication,” noted Carl Schmid, deputy executive director of The AIDS Institute. Carl noted high out-of-pocket costs for medicines on some exchange plans result in non-adherence and lead to patients becoming sicker. This means increased hospitalizations and patients becoming less receptive to treatments, ultimately hindering their ability to manage their condition and limits opportunities to live healthy and independent lives.

Not only does patient adherence to medicines improve health outcomes, it also generates cost-savings for the health care system as a whole. Virginia Ladd, President and Executive Director of the Autoimmune Related Diseases Association, listed increased premiums, deductibles, co-pays, and the addition of high coinsurance among the financial burdens placed on those with chronic conditions, who are already among the most vulnerable to financially.

Angela Ostrom, Vice President, Public Policy and Advocacy with the Epilepsy Foundation, described the serious medical consequences epilepsy patients face if they don’t have access to treatment. “Patients with epilepsy who do not take their physician prescribed medications are at a high risk for developing breakthrough seizures and related complications.” These reactions are on top of the financial strain epilepsy patients may already face. “A failure to fill a prescription or adhere to physician directed use of a medication can result in costly health complications. This is especially true for people living with epilepsy, who rely on anti-epilepsy drugs (AEDs) -- the most common and most cost effective treatment for epilepsy, to control and/or reduce seizures.”

Margaret Barton-Burke, president of the Oncology Nursing Society, agrees that cost shifting to vulnerable populations needs to be reexamined. “Insurance coverage is meant to spread risk across an entire pool of patients, but these formularies are shifting the cost burden entirely onto the patient population dealing with diseases like cancer,” Margaret said.

Despite the challenges facing far too many patients, the good news is that solutions exist to ensure that coverage and access go hand in hand. Two examples: The Department of Health and Human Services could release guidance that prohibits placing all medicines in a class on the highest cost sharing tier. Additionally, states could play a larger role in reviewing formularies and tier placement. Above all, when barriers exist that unnecessarily restrict access to medicines, we must all work together to advance practical solutions with the patient in mind every step of the way.  

I would like to thank all of our respondents for contributing to this important conversation. It will be an ongoing one and PhRMA looks forward to playing a leading role. Please share your thoughts with us here or on Facebook and Twitter. We look forward to hearing your ideas and comments. 


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