Congressional MS Briefing

On September 12, 2013, the Congressional MS Caucus and the National MS Society are sponsoring a congressional briefing focused on Progressive MS. Click here to download the invitation (pdf). Please ask your Senators and Representatives to attend. We will be sending the invitation out electronically in the next few days to all members of the House and Senate, but the personal touch of a constituent asking can make a difference!

New MS Caucus in PA General Assembly Formed!

We are excited to announce the formation of the MS Caucus in the PA General Assembly. Modeled after the federal MS Caucus, the PA MS Caucus will focus on educating legislators about multiple sclerosis and the latest in research, provide opportunities for legislative staff to learn about the resources available to help their constituents living with MS and to identify potential solutions to address the challenges of people living with MS in PA. This will be the first statewide MS Caucus in the country!

We are thrilled to announce that Representative Marguerite Quinn will serve as Chair of the Caucus. The PA Chapters of the National MS Society extends its sincere gratitude to Representative Quinn for her commitment to this role.

The members of the General Assembly who have joined the MS Caucus to date are:

  • Rep. Ryan Aument
  • Rep. Ryan Bizarro
  • Rep. Michele Brooks
  • Rep. Marc Cohen
  • Rep. Mary Jo Daley
  • Rep. Tina Davis
  • Rep. Anthony DeLuca
  • Rep. Mike Fleck
  • Rep. Dick Hess
  • Rep. Rob Kauffman
  • Rep. Mark Longietti
  • Rep. Ryan Mackenzie
  • Rep. John Maher
  • Rep. Tim Mahoney
  • Rep. Robert Matzie
  • Rep. Thomas Murt
  • Rep. Mark Mustio
  • Rep. Marguerite Quinn, Chair
  • Rep. Harry Readshaw
  • Rep. John Sabatina
  • Rep. Rosita Youngblood

If your representative is not on this list, we need you to take action today by calling, emailing or faxing your assemblyperson and asking them to join the MS Caucus. It is easy to take action, go to this website and complete the information to send a letter already written for you!

Message from the Chair

John Platt, Chair, PA Government Relations Committee

As I sit here, I reflect on the news of Annette Funicello’s passing. In Disney’s official statement on the matter there is one line that sticks a knife into my heart.

She died peacefully from complications due to Multiple Sclerosis, …

It takes my breath away to think this line may be associated with my very mortality. Or that my daughters will have to stare at these words wondering, “if only more had been done”.

Advocacy in its real definition can be intimidating. Advocacy can be something that may not interest you. Advocacy may be something you never even considered. Advocacy to me can be broken down to its simplest. DOING. That’s all. Telling my MS story. Bringing light to costs and barriers to the very drugs that show hope for the MS community. Creating awareness for MS research dollars in jeopardy of being cut from budgets. By sharing, bringing light to, and creating awareness we can stamp out the “if only more had been done” scenario.

I write today knowing…

Over 136 emails, and numerous calls, were made to PA State Senators urging them to co-sponsor Senator Mensch’s resolution that would conduct a study on the impact of specialty tiering, co-insurance and co-pays on injectable medications in PA. As a result, there are 17 co-sponsors to this legislation.

20 Proclamations were secured by volunteers across the Keystone State recognizing MS Awareness Week and the work of the National MS Society. Resolutions were also introduced in the PA Assembly and Senate.

BUT more importantly, is this enough? I write today knowing…

There are fundraising events such as Walk MS, Bike MS and Muckfest MS popping up all over the state, providing opportunities for communities to come together to raise funds for a cure. Well, advocacy is another opportunity.

One of my favorite books, Hemingway’s ‘The Sun Also Rises’ ends like this.

“Oh, Jake,” Brett said, “we could have had such a damned good time together.”

“Yes,” I said. “Isn’t it pretty to think so?”

Isn’t it pretty? Isn’t it pretty to think WE CAN do more to stop MS in its tracks! I never want to read of someone passing from complications of Multiple Sclerosis. I can do more, together we can do even do more, and won’t you join us? I plead to you, join me in pushing forward.

Email me at John@johndplatt.com or Karen at Karen.Mariner@nmss.org to learn about how you can join me today.

Take action today to help PA residents affected by cost of MS treatments!

MS medications cost as much as $3,800 a month. Health plans have increased enrollee cost-sharing amounts, instituted co-insurance and created specialty tiers in recent years. For those patients in health plans subject to these practices, the rising cost of multiple sclerosis (MS) disease modifying therapies and other medications can jeopardize access to treatments.

You can do something about this today! State Senator Bob Mensch is introducing legislation that would conduct a study in PA on the impact of this issue on people’s access to care. Urge your State Senator to co-sponsor by going here.

There are over 23,000 PA residents that are diagnosed with multiple sclerosis. Let’s make sure they have access to treatment.

Action Needed

PA State Senator Bob Mensch is circulating a memo requesting co-sponsors on proposed legislation that would create a PA study panel to review the specialty tiering, co-pay and co-insurance issue of injectable medications, including the MS disease modifying therapies. The memo which can be found here provides details.

What can you do?

Call your state senator and urge them to become a co-sponsor. Don’t know your state senator? No problem, you can find out by going here. A sample script is below. Please contact Karen Mariner with any questions via email at Karen.Mariner@nmss.org or by calling 215-271-1500. Should you receive any response, either positive or negative, from your senator’s office, please let Karen know.

Sample script:

Hello, my name is _______________and I am a constituent of State Senator ______________. I am a [person living with MS or relative of a person living with MS] and I am calling to ask that Senator ______________ co-sponsor Senator Bob Mensch’s proposed legislation to conduct a study of the impact of specialty tiers in PA. This is important to me because the cost of disease modifying medications used to treat diseases like multiple sclerosis is astronomical and we need to find a way to keep these drugs affordable for people living with MS.

The 2013 Public Policy Conference is taking place now

The National MS Society is holding its annual Public Policy Conference March 4-6, 2013. Hundreds of volunteer activists and chapter staff will head to the hill on March 6 to urge our elected officials to preserve crucial funding for the National Institutes of Health, Food and Drug Administration, the CDMRP (Congressionally Directed Medical Research Program) and support for MS Awareness Week and the MS Caucus.

Check out our Facebook page to track our progress and get updates!