Arthritis Foundation PA Advocacy Day

Arthritis Foundation PA Advocacy Day

Today I have a date with my bed. I’m not moving, my whole body is not feeling so great . . . but it’s worth it. For many of you who commented on this picture, or responded via twitter, you know why! It was a long day for someone who gets exhausted from doing something for 2 hours, but it was such an amazing experience.
PA State Capitol in Harrisburg, PA
PA State Capitol in Harrisburg, PA

I’ve been an epatient advocate for about a year now, but I’ve never gone in front of legislators to help advocate for reform. June 23rd was Pennsylvania Arthritis Advocacy Day at the Capitol in Harrisburg, PA. I can’t say I’ve ever been to the Capitol before, so I wasn’t exactly sure what to expect.

I had signed up to participate in the day on a whim. To be completely honest, I forgot that I signed up and then had conflicting plans. It wasn’t until I received a phone call from one of the other advocates, asking if I wanted to car pool, before I realized I really DID want to go and be an advocate.
So I rearranged some things and booked a hotel room.
Monday morning we were given a brief training on the issues that we would be talking about and learned some advocate 101 do’s and don’ts.  We heard from a clinical nurse and a parent who has two children with arthritis. Bless her heart, I can’t even imagine being the parent of two children with RA, among other diagnoses. Definitely added her family to my prayer list.
The two issues we were advocating at the state level were concerning pre-authorizations and specialty tiered drugs.
In Pennsylvania, there is no standard on how insurance companies file or give out authorizations. The Arthritis Foundation, along with many other foundations and patients, would love there to be legislation around a standardized process for filing a pre-authorization. Currently, insurers in PA are allowed to set their own prior auth processes. Each different insurer may have multiple different prior auth forms, depending on insurance plan.
Our ask is that the appropriate state agency develop an electronic uniform prior authorization form for prescription medications, treatments and procedures, that all insurers will be required to accept. This form should be developed with input from interested parties and not exceed 2 pages.
The second issue surrounds specialty tiered pharmaceuticals. Since the release of biologics, insurance companies have formed a new tier of medication. Instead of having set copays, the patient is required to pay a percentage of the drugs cost. For instance, say you were diagnosed with a certain type of cancer that required a drug which costed $40,000 a month. (Yes, this is an actual cost of certain medications that could be prescribed). Since this tier is percentage based, the patient would be required to pay 33% of the total. I don’t know many patients who have that kind of money just sitting around to be able to use, monthly, for medication. This situation is a matter of life or death too. There are many calls each month to the Arthritis Foundation saying that certain arthritic patients weren’t able to take their medication because of the cost.
Currently, the Legislative Budget and Finance Committee is completing a study of the effects of high cost-sharing for speciality drugs on patient groups in PA. The hope is there will be legislative action taken to protect patients once the study is released.
Our ask is that a health benefit plan, subjected to a tiered formulary, shall ensure that any required copay or coinsurance not exceed $100 per month for a 30 supply of any single drug AND any required copay or coinsurance for drugs on a speciality tier shall not exceed, in the aggregate for speciality tier covered drugs, $200 per month per insured.
These two issues pertain to arthritis, but by no means only apply to arthritis patients. My lovenox took an extra month to get because of pre-authorization hoops the great nurses at my doctors office had to jump through. When we heard from the clinical nurse, she mentioned that the majority of her time was spent completing authorizations, following up on authorizations and filling out paper work. Paper work is taking up her triage nursing time! And no wonder we leave messages at our doctor’s offices and it can take forever to get a call back.
Meeting with Sentaor Matt Smith's Chief of Staff Jake Pawlak
Meeting with Sentaor Matt Smith’s Chief of Staff Jake Pawlak

After learning about the issues, we boarded a bus and off to the Capitol we went. Some of us had scheduled appointments with our Senators and Representatives and some were stopping by offices and dropping off information.

I was partnered with Beth, who is the Great Lakes Region Division Vice President, since we’re both constituents of the same Senators and Representatives. We split up the talk and were ready to conquer our appointments. Within our appointments, we had the opportunity to meet with the staff of the Lt. Governor’s, Representative John Maher’s and Senator Matt Smith’s office. We received great feedback and advice on our asks and were thrilled to see familiarity with SR70, the specialty drug study. The thing I took away from the experience the most was people’s reactions to me. When we met with Rep. John Maher’s staff there was a shocking response when I told her I had arthritis. It was assumed that I was there as part of the Foundation staff, not there to give a testimonial on how it affected me on a daily basis. Everyone was so sweet, genuine and supportive.

The day was tiring, but it was awesome! It got me so excited about my future role in advocacy. I truly can’t help but look at my disability as a blessing. If I wouldn’t have been on disability I would have never ever thought to go advocate at the Capitol, I would have never ever been introduced to the fantastic group of people I have in my life now and I wouldn’t be so passionate about the work I’m doing. Sitting listening to other’s arthritis stories and hearing about the wonderful work the Arthritis Foundation is doing, was just awe-inspiring. The past year, I volunteered for two Arthritis Foundation events- the walk (read about it) and the jingle bell run (read about it) – but this was my first true advocacy exposure. It makes me so excited to get to Stanford in the fall to meet with all the professionals at MedX.

Like Robin Robert’s Mama told her “Make your mess your message” and that’s just what I’m going to do!
Wishing You A Pain Free Day!