California Advocacy Summit brings together new faces and familiar issues

On April 16, more than 70 advocates from around the state of California representing the National Psoriasis Foundation, the Arthritis Foundation and the California Rheumatology Alliance gathered for the sixth annual California Advocacy Summit. This event brought together patients, caregivers and providers working for better access to care for people affected by immune-mediated diseases. 
 
At this year’s event, advocates let legislators and their staff know that in 2020 we want to see utilization management reform for insurers and review entities – specifically, new protocols for step therapy and prior authorization. 
 
Utilization management delays care and contributes to negative patient outcomes
 
Utilization management (UM) protocols  are used by insurers to determine which medical services, treatments and prescription drug benefits will be approved for patients. UM protocols are becoming increasingly common across plans. Without proper guardrails, UM limits a health care provider’s ability to tailor care to your individual needs. For people living with psoriatic disease, prolonging or delaying treatment may result in increased disease activity, loss of function, and, possibly, disability. 
 
One advocate, Shivani Chopra, has erythrodermic psoriasis and psoriatic arthritis. She recounts her battle with “fail first” step therapy protocols and why this issue is so important to her. 
 
“I spent 10 years of my life disabled. I was told to fail first for 12 years of my life,” she says. Chopra is 36. “Not only did I have serious side effects from five years of chemotherapy, countless hospitalizations, surgery and epidurals in my spine, arm, legs and feet every two weeks, I lost my fertility. I have lost most of my bone density and now have osteoporosis with the bones of an 85-year-old woman.” 
 
The importance of reforming step therapy or fail first is easy to understand, she says. “I do not want to see another soul suffer the way I did and still do today. We have a responsibility to help each other. I as well as these patients are not asking for a magic wand or a magic genie, we are simply asking for the tools to get better.”
 
Throughout the day, advocates told story after story about how they, or a loved one, had experienced barriers to care due to utilization management and explained why 2020 needs to be the year patients see change.   
 
Expanding guardrails in 2020 
 
In 2019, we have already seen four states (Georgia, Oklahoma, Virginia and Washington) pass similar legislation that addresses step therapy. There are now 20 states that have passed step therapy legislation. In California, patient advocates are looking to expand guardrails on legislation passed in 2015 with three focuses: 
  • Establish an exception process that ensures patients are getting the appropriate treatment for their disease. 
  • Expand current protections to Medi-Cal (a state program that offers free or low-cost health coverage for children and adults with limited income and resources). This legislation would include Medi-Cal in any new protections.
  • Require that the utilization review organizations’ process for approval and denial be easily accessible, list criteria, and be based on clinical evidence, not cost alone.
Advocates wrapped up the day by meeting with more than 50 legislators and their staff, including meeting with every committee member from Senate and Assembly health care committees. 
 
Many event participants are feeling energized and hopeful for 2020. “How many times in our lives do we get this kind of chance to help our community?” Shivani asks. “This legislation can be life-altering for many in our community, and I cannot wait to be there when it happens.” 
 
Stay up-to-date on advocacy
 
Learn more about NPF’s step therapy work. Share your story or learn about our current and upcoming activities. Follow us on Twitter via @NPF and #NPFadvocacy. Please visit our webpage for more information or contact Brittany Duffy-Goche at [email protected] or 503-546-8364 to discuss the many different ways you can get involved. 

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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