Annual California Advocacy Summit highlights continuity of care issues for patients

goes_with_prentice_-_may_advocacyNPF patient advocates meet lawmakers in Sacramento to work for change.

According to a recent study from the health care consulting firm Avalere, only one-third of enrollees in a 2015 health insurance plan on picked the same plan as the previous year. Between individuals coming in and out of the market and those who switch plans, the majority of people in exchanges are enrolled in their plans for one year or less.

With this high rate of health plan switching, it is critical we work to provide continuity of care by ensuring that patients treating a chronic disease are not facing negative health outcomes due to these changes.
At our third and most successful annual California Advocacy summit, on May 8, 2017, the National Psoriasis Foundation (NPF), the Arthritis Foundation (AF) and the California Rheumatology Alliance (CRA) headed to California’s capitol building in Sacramento to raise awareness of this issue in the form of Assembly Bill 1353. AB 1353 ensures continuity of care for enrollees who are medically stable on a medication and whose provider continues to prescribe the medication. These safeguards will provide patients with consistent access to coverage and care, even when they change their health plan.

Specifically, this bill will:

  1. Establish reasonable and appropriate time-frames for a response by a health service plan when a patient requests an exception to the plan’s regular procedures and prior authorizations;
  2. provide an additional protection for patients suffering from life-threatening or potentially disabling health conditions,
  3. protect patients who are stable on their prescribed medications, improve patient adherence to their medication schedule, and reduce adverse reactions from changes in the patent’s medication,
  4. preserve the decision-making power of the patient-provider relationship, and
  5. reduce overall health care costs through improved medical adherence.

At the California Advocacy Summit, nearly 50 patient advocates spent the morning learning about existing state laws, how AB 1353 will protect California patients, and preparing for an afternoon full of legislative meetings. After lunch, advocates divided into nine groups to meet with various California representatives and senators. The aims of the meeting were to share their personal stories, raise continuity of care awareness and identify potential co-sponsors for AB 1353. In less than four hours, advocates from NPF, AF and CRA had conversations with over 70 legislative offices.

In addition to these meetings, advocates took to social media to share their experiences throughout the day and thank their representatives for productive meetings. You can see these posts on Twitter, Facebook and Instagram by searching #CASummit17.

Since AB 1353 is a two-year bill (meaning votes will not take place until the 2018 legislative sessions), advocates are looking forward to resuming their hard work next year. In the meantime, NPF continues to bring attention to this important issue and hopes to identify more California patients and providers to support this tremendous effort. If you are interested in getting involved, please contact Amy Prentice, NPF’s State Government Relations Manager, at or 503-546-5551.

The story of our nationwide Advocacy Action Networks

advocacy-action-networkNothing is as powerful as a group of concerned citizens visiting their senator or representative.

The Advocacy Action Networks are a connected network of patients and health care providers. They advocate for legislative solutions to access-to-care barriers to improve the lives of those affected by psoriatic disease.

They connect once a month to discuss legislative updates and identify advocacy opportunities in their respective regions. The Advocacy Action Network was conceived in 2016, when the National Psoriasis Foundation’s advocacy team was working to pass patient protection bills in the Northeast region of the country.

NPF was so successful in the Northeast that we needed more hands – a group of highly engaged advocates we could call on to engage and educate lawmakers. Having an engaged advocate meet with their respective lawmaker is much more effective than having a professional lobbyist visit a lawmaker’s office. Lawmakers are more receptive to an actual constituent than to anyone else.

NPF already had a handful of highly engaged advocates in the Northeast. We needed to mobilize these advocates to further elevate the patient voice. From there the Northeast Advocacy Action Network was born. Every month, patient and health care providers got together to share legislative solutions to access-to-care barriers in their region. Together they wrote emails, joined coalitions, and lobbied lawmakers.
A victory in the early going
By the end of the 2016 legislative year, the Northeast Advocacy Action Network had many legislative victories. For example, they successfully lobbied New York Governor Andrew Cuomo to sign their “step therapy” bill into law. (Under the practice known as step therapy, patients can be required by their insurance companies to try a less expensive drug and switch to a costlier one only after the cheaper option fails to work.)

This legislation was debated for years in the New York state legislature. It finally passed on New Year’s Eve of 2016. It is one of the strongest step therapy bills in the nation, if not the strongest. This new law, signed by the governor, doesn’t ban step therapy, but makes it easier for doctors to override such protocols, allowing the doctor instead of the insurance company to decide the best treatment plan for the patient.

Seeing how successful the Advocacy Action Network was in the Northeast, we decided to duplicate the “Advocacy Action Network” in other regions of the country. Now NPF also has the Midwest Advocacy Action Network and the Southern Advocacy Action Network

Each network is led by an NPF advocacy staffer. For example, Patrick Stone (Director of Government Relations) leads the network in the Northeast, MaryAnn McCabe (State Government Relations Manager) leads the network in the Midwest, and Amy Prentice (State Government Relations Manager) leads the network in the South. The West Coast Advocacy Action Network, run by McCabe and Stone, will begin in the fall.

The Advocacy Action Networks were engineered deliberately to empower their advocates to elevate the patient voice. These networks have been very successful because their advocates purposefully engage their lawmakers to take action, resulting in legislative victories. These victories have impacted the lives of thousands of patients across all diseases – not just psoriatic disease. That is something everyone involved can feel good about.

We are very pleased and proud to share the success of our Advocacy Action Networks. If you are interested in advocacy and would like to join an Advocacy Action Network, please contact MaryAnn McCabe ( to get involved.

NPF on the front lines at Advocacy Day in Florida

florida-mapThe State Government Relations team goes to Florida to continue its battle against step therapy.

Advocates from the National Psoriasis Foundation (NPF) and Arthritis Foundation (AF) headed to Tallahassee, the Florida state capitol, on April 4 to show their support and advocate for the passage of House Bill 877 and Senate Bill 530. Passing legislation to curb step therapy protocols has been a multi-year effort headed by a large coalition of patient and provider groups. Although it has been a challenging journey, many hope our tireless work in Florida will come to fruition this year.

Indicators show step therapy legislation has a very realistic chance of passage. In Florida, lawmakers are limited in the number of bills they choose to sponsor each session. Discussions by bill sponsors with fellow legislators to gauge interest in step therapy legislation were met with strong support, showing Florida legislators’ increased understanding of the harmful impacts of step therapy and their desire to institute change.

The Florida committee reference process also poses an administrative hurdle. Each bill must successfully pass out of three reference committees, making it a long road just to reach the Senate and/or House floor. This year, we are excited to share, both bills are making quick progress through their reference committees.

House Bill 877 unanimously passed out of the Health Innovation Subcommittee and was allowed to bypass the second reference committee, leaving one final hearing in the House Health & Human Services Committee. Senate Bill 530 also unanimously passed out of its first committee. During our April 4 Advocacy Day in Florida, we were able to attend the second hearing for SB530 in the Senate Judiciary Committee. NPF advocates were excited to stand and wave in show of support. Again, the bill passed unanimously, leaving the Senate Rules Committee as our final stop.

Anticipating this passage, NPF and AF advocates spent the rest of our Advocacy Day meeting with the members of those two final committees, sharing their personal experiences with step therapy and urging the committee members to support these very important bills. NPF advocates visited a total of 18 Senate and House members, with nearly half committing their support.

With Florida legislators’ growing interest in step therapy legislation, the strong backing of patient and provider groups, and years’ worth of education efforts, we are optimistic about limiting step therapy practices in Florida and providing Florida residents managing a chronic or fatal illness the access they need to critical therapies.

Here’s a look at our recent attempts to curb step therapy:

Iowa Fail First Advocacy Day

Ohioans for Step Therapy Reform Advocacy Day

Texas Step Therapy Lobby Day

Ready to help support our efforts to reduce step therapy in your state? Please contact State Government Relations Manager Amy Prentice at to learn how you can get involved!

NPF helps educate lawmakers on Iowa Fail First Advocacy Day

In March, we traveled to Iowa to explain to lawmakers the problems step therapy poses for people with psoriatic disease.

Every year, the State Government Relations team travels across the country to educate state lawmakers on the barriers people with psoriasis and psoriatic arthritis face when they’re trying to get the care they need – especially when they must fight harmful step therapy practices.

(Step therapy allows insurance companies to require patients to try and fail less costly medications until they can receive the right treatment prescribed by their doctors.)

And boy, did we have a busy March! Not only were we in Washington, D.C., lobbying on the Hill with our patient advocates, we were also in Des Moines, Iowa, where we urged state lawmakers to introduce legislation that will curb step therapy protocols.

On March 15, multiple patient advocacy groups including the National Alliance on Mental Illness (NAMI), the Arthritis Foundation, the Multiple Sclerosis Society–Iowa, the American Cancer Society and the National Psoriasis Foundation joined the Iowa Medical Society to lobby state lawmakers on the impact of step therapy and “fail first” insurance policies. We also asked them to bring both the House and Senate bills to the floor.

The day opened with a training session and overview of activities. The coalition then hosted a media advisory with our patient advocates.

This was a great opportunity for NPF because one of our patient advocates, Cynthia Heaton, was selected for an interview with NBC-TV’s Des Moines affiliate. Heaton shared a moving story about her son’s struggle with step therapy, and the clip ran that night.

The coalition had the chance to meet with more than 30 lawmakers. We appreciated their time and willingness to listen to our stories. By the end of the event, we knew we were successful because we had helped members of the Iowa State Legislature understand what happens to our community when they are subjected to step therapy protocols.

Here’s a look at our recent attempts to curb step therapy:

Ohioans for Step Therapy Reform Advocacy Day

Texas Step Therapy Lobby Day

Ready to help support our efforts to reduce step therapy in your state? Please contact State Government Relations Manager MaryAnn McCabe at to learn how you can get involved!

The true cost of step therapy legislation

dollar-puzzleWithout step therapy, any initial rises in drug costs would be offset by long-term savings in patient care.

“Cost,” “budget” and “deficit” are words we see or hear almost daily in news headlines. Lawmakers and citizens alike are concerned that our governments are spending too much or not enough, especially when it comes to our health care.

As lawmakers consider legislation at the federal and state level, one important part of the process is the budget impact. These potential impacts are often viewed through what is called a “fiscal note” or “fiscal impact statement.”

As the National Psoriasis Foundation (NPF) continues its work to curb step therapy practices through state legislation, we see the question of cost consistently raised. Opposition by health insurance companies and Pharmacy Benefit Managers often cite increased pharmacy and premium costs as the primary reason to defeat step therapy legislation. Because legislators often rely on these types of organizations for data, and because of the overall concern regarding health care costs, we have seen a rise in the use of fiscal notes on step therapy legislation.

Bills showing a negative budget impact are much tougher to pass. NPF, patient advocates and any supporting party should understand why our legislation saves health care dollars rather than spends them, which data continually shows.

The hidden costs of step therapy

Take Kansas, for example. The fiscal note stated that our step therapy legislation would could increase annual prescription drug costs to the State Employee Health Plan by approximately $1 million. This, of course, sounds like a legitimate concern, but with the correct information, can be proven to be inaccurate.

It’s important to consider how the long and difficult step therapy process can impact a patient’s ability and willingness to continue treatment. In one study cited in the American Journal of Managed Care in February 2009, researchers found “patients discontinued their medication more so after step therapy was implemented,” and reported an “initial 7.9 percent reduction in days of medication supplied.”

For patients with a chronic disease or life-threatening illness like psoriasis or psoriatic arthritis, it is critical they take their medication consistently. When a patient fails to take their medication because of step therapy and other insurance practices, health care costs increase due to increased hospital stays and medical appointments.

In addition, while requiring a patient to take ineffective therapies for a prolonged period of time as they go through the step therapy process, step therapy can lead to irreversible disease progression, lengthy hospital stays and other harmful side effects. Potential increases in drug costs will be offset (and likely save money) when patients live healthier lives.

We’re excited to see the successful passage of step therapy legislation in various states across the country because it proves this legislation will not lead to an increase in health coverage or premiums by the patient. In some cases, insurers have even chosen not to oppose this legislation.

We look forward to continuing these successes and further proving the importance of increasing access to important therapies for all patients. As these successes continue, we will show that ensuring patients receive the treatments prescribed by their doctor will not only increase their quality of life but decrease overall health care spending.

Amy Prentice is the State Government Relations Manager for the National Psoriasis Foundation.