The next step in advocating is getting to know the policy issues that affect the psoriatic disease community and the avenues for policy change.
Insurance barriers, such as step therapy, are a major focus of our advocacy efforts because so many individuals with psoriatic disease are unable to access necessary treatments due to certain insurance practices. The results from a 2019 NPF survey of over 1,000 people with psoriatic disease suggest that step therapy increases the time it takes to find the right treatment and increases the emotional impact of living with psoriatic disease.
Visit the Terms to Know page for definitions of terms related to insurance barriers.
Step therapy is an insurance protocol that requires patients to try and fail multiple drugs selected by the insurance plan before their insurance will cover the treatment prescribed by the patient’s health care provider. Step therapy is used in an effort to control costs – having patients try the “least costly” options first.
However, step therapy protocols do not always follow clinical guidelines or take a patient’s unique medical history into consideration. Patients can request an exception to a required step, but only some states have clearly outlined the circumstances under which an exception must be granted.
41 percent of people with psoriatic disease have experienced step therapy:
NPF works to improve the step therapy process for people with psoriatic disease. Because state and federal governments have control over different types of health plans, it’s necessary to pass step therapy reform at both levels to cover all types of insurance.
- Federally, we work on the Safe Step Act, a bipartisan bill introduced in both the House of Representatives and the Senate. The Safe Step Act would create step therapy protections for people who get their insurance through their employer, because these plans are regulated by a federal law called the Employee Retirement Income Security Act of 1974 (ERISA). The federal government also regulates Medicare. NPF has engaged with the Centers for Medicare and Medicaid Services (CMS) about creating step therapy protections in Medicare.
- State laws can regulate individual marketplace health plans, small group insurance, state employee health plans and Medicaid. Over half of the states have passed some form of step therapy protections, but they do not always apply to all state regulated health plans – for example, many state step therapy laws only apply to individual marketplace and small group insurance plans, while other states may only apply to Medicaid.
Keep in mind that even if a state has passed step therapy protections, someone living in that state who receives health coverage from a private employer or Medicare would not be impacted by the state law. Similarly, should the Safe Step Act become law, someone with an individual marketplace plan is only protected if their state has passed protections, and not by the Safe Step Act alone. That’s why it is so important to work on both state and federal policy.
Patient Stories Have Been Key in Passing Step Therapy Reform
Read some patient stories about step therapy from people with psoriatic disease:
- “During the 10 months that I was put through step therapy, my disease rapidly progressed. Within about 4 weeks of stopping the biologic drug treatments, I was back in a wheelchair. Over the course of 10 months, I had 14 surgeries to address some of the comorbidities that are often associated with psoriatic arthritis…” Watch Katie’s story about step therapy and psoriatic arthritis.
- “It was physically painful as well but the emotional pain and now the ongoing scarring is something I’ll have to live with the rest of my life…” Watch Samantha’s story about step therapy and psoriasis.
- “My doctor sent in a request for treatment. The insurance company denied the treatment saying they want me to try something else, first. My doctor responded that I already had tried these treatments and failed. The insurance company still denied…” Watch Jody’s story about step therapy and psoriatic arthritis.
Read more step therapy stories from across the country.
Now it’s time to put what you’ve learned to use! Download this step therapy guide to find out if your health plan uses step therapy, learn about step therapy in your state, and check if your members of Congress have supported step therapy reform yet.
Cost for care is another challenge for our community. In fact, 35% of people in a 2019 NPF survey said cost for medications was the largest deterrent for seeking treatment for psoriatic disease.
Visit the Terms to Know page for definitions of out-of-pocket costs and policies that affect patient’s costs.
Take the Next Step
Now that you know more about the pathways for policy change and some of the policy issues NPF works on, it’s time to take the next step. Take this short quiz to see how much you’ve learned.
Now that you know more about NPF's policy priorities, learn how to tell your story for a meeting with lawmakers.