Patients, especially those suffering from chronic conditions, deserve access to the medicines they need to live longer, healthier lives. Today, PhRMA released a new fact sheet on access to diabetes medicines in exchange plans in 2015 (2014 fact sheet is available here). The fact sheet highlights some of the potential barriers to accessing needed treatments. Learn more on AccessBetterCoverage.org, in our patient profiles and our other fact sheets.
This is the fifth post in our Burden on Patients Q&A series with patient advocates. To learn more, we talked with Larry Hausner, longtime patient advocate, former CEO of the American Diabetes Association and chief patient advocate for the Partnership to Fight Chronic Disease.
Question (Allyson Funk): Can you tell me about you, your career representing patients and what you’ve learned over the years representing patients with diabetes?
Answer (Larry Hausner): I worked, as the CEO of the American Diabetes Association (ADA) for seven years and during that time the most important thing to me was to make sure that the needs of diabetes patients were represented in what we were doing. We tried to do everything we could to better the quality of life for those with the disease. That includes Type 1 and Type 2 patients as well as those with gestational diabetes. Over time we wanted to make sure when you looked at any aspect of a person with diabetes’ life that the American Diabetes Association was there to help.
Currently, one of the roles that I’m fulfilling is as the Chief Patient Advocate for the Partnership to Fight Chronic Disease, a non-profit coalition made up of hundreds of patient, provider, community, business and labor groups as well as health policy experts. They are committed to raising awareness of the number one cause of death, disability and rising health care costs: chronic disease. Diabetes is one of the main components of the chronic disease world. This role with the Partnership is a continuation of what I’ve done for the past 27 years, representing patients in the diabetes, cancer and multiple sclerosis space.
Q: How do medicines help patients manage and treat diabetes?
A: Medication is a common form of treatment for people with diabetes, ranging from oral medications to people being treated with insulin. For those with Type 2 diabetes, the medications are always used in conjunction with diet and exercise. It is really important that treatment goes beyond the medication, and includes the patient’s entire lifestyle. This doesn’t shortchange the importance of adherence based on their physician’s instructions.
One reason medications are extremely important for those with diabetes is because of the importance of keeping the disease under control. If you do not keep the disease under control, the complications that can arise from diabetes down the road, like blindness, kidney failure, the loss of a limb and heart attacks can be devastating. Because these complications don’t occur acutely, it often can be very hard for diabetes patients to follow their doctor’s advice and adhere to prescribed medications.
When the possible complications seem far down the road and you don’t feel anything immediately, you really have to make sure you are working closely with your doctor to control the disease because uncontrolled diabetes is not something that anyone wants to deal with.
Q: The Affordable Care Act (ACA) expanded health insurance coverage to a broader population. What are you hearing about coverage in health insurance exchanges, in particular access to diabetes medications?
A: The main thing that the Affordable Care Act has done for people with diabetes is individuals can no longer be denied coverage because they have diabetes, a pre-existing condition. This is so important because now that they can’t be denied coverage, they can obtain coverage that will allow them to afford the right medications and treatments for themselves. They also now have freedom in their life like anybody without a chronic disease, without diabetes, to be able to switch their jobs and to be able to switch health care plans as needed.
One of the challenges is that coverage can be uneven in the state exchanges. In the states that expanded Medicaid, a recently published study showed these same states are far more likely to have individuals newly diagnosed with diabetes. This has allowed more people with new coverage to get tested, diagnosed and begin receiving treatment and get the medications they need much earlier. The earlier you are diagnosed, the earlier you begin treatments, giving you a better opportunity to avoid serious complications down the road. Moving from uninsured to insured for people with a chronic disease like diabetes can really help assure that patients receive the appropriate medications and treatment.
One of the things that has come out of the ACA is people are now making choices they never had to make before. It is still very hard for people to know what health plan to choose. If people choose the wrong plan either because they don’t understand or they can’t afford the right plan that can really impact access to the medicines and care that patients receive.
Q: What are the biggest concerns facing diabetes patients in health exchanges?
A: Concerns are around costs and what is included on formularies. When it comes to cost, depending on what plan you choose there may be a very high deductible; there may be co-pays or coinsurance. Education is important so that patients can make better choices. When it comes to high cost-sharing, it can become another reason why patients may not take their medications as prescribed. This can cause additional problems for the patient and additional systematic costs. We need to make sure as we move forward with the Affordable Care Act that there is more education and that people have the opportunity to better understand their options. We need to make sure the plan that they choose is a plan that can help get them the medications they need to treat their diabetes.
You also don’t want somebody to need to change their medications that have been working for them and go through step therapy. This is where a patient being treated very well on a medicine finds it is not on a plan’s formulary and they are forced to take a step back and start taking different medications and fail before they can get back to the medication they were on originally, where they were being treated well and feeling good. We need to make sure that over time, the state exchanges through their websites continue to better educate the public by making the system easier for the average person to navigate and understand.
Q: Is there anything else we missed?
A: The availability of health insurance for individuals with diabetes is real important. While at the ADA, I saw many people with diabetes that were not able to get health insurance, because they were denied coverage because of a pre-existing condition (diabetes). Now that they cannot be denied coverage because of their disease, we have taken step one. Step two is that they need to understand that they must adhere to their medicines as prescribed if they want to control their diabetes.
Allyson Funk Ally is a former senior director of public affairs at PhRMA focused on advocacy issues for the biopharmaceutical industry. Her expertise includes Medicare, Medicaid, 340B, health reform and more. Prior to PhRMA, her experience included leading health communications for a large membership organization, supporting public affairs clients and working for the governor of Louisiana.