Advocacy Efforts

September 8 – 12, 2017 

I was in Cleveland on September 8^th and attended the “Shaking with Laughter” Program presented by Karen & Mark Jaffe, to benefit the MJ Fox Foundation. 

Karen updated me on her INMOTION Program, a Parkinson’s Wellness Center that offers an array of free programs to attendees.  INMOTION, after a successful opening, came under fiscal pressure to maintain the level of growing Programs.  In assessing priorities, it was determined that a recently started Drum program needed to be cut.  Attendees, who had enjoyed the experience and had developed relationships through the process, asked for the privilege to pay for the Class on their own.  Sufficient funds were raised to continue the Class.

Other attendees included:

• Bill Wikins:  Wilkins Parkinson’s Foundation, Atlanta, MJFF Patient Advisory Council ~ PWP
   
• Quentin Dastuque: Former State Representative; Louisiana MJFF Patient Advisory Council ~ PWP
   
• Sonny Whelan: MJFF Board of Directors
   
• Debbie Brooks: President & Co-Founder MJFF

 

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I was in Newark, NJ on Sunday, to attend meetings hosted by a Pharmaceutical Company on Monday & Tuesday. 

This workshop included a gathering of invited PWP, PD Agencies, Clinicians, and Researchers, and was facilitated by Dr. Matt Stern’s, head of the University of Pennsylvania, Neurology.

The host is taking a hard look at the communication between PWP and those that support their battle with the disease.  The sessions examined where PWP get their information related to treatment options, and ways the time and language used can be more effective at erasing unknowns and thus improve quality of life.

One action step from the meeting was a strong endorsement of a Pre Patient Wellness Inventory completed by the PWP prior to their visit.  There can be an enormous amount of information sought by the parties during a typical PD treatment visit.

 

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Report on “Vist on the Hill” 

July 26, 2017 

On July 26^th I was “on the hill” in Washington, DC, advocating on behalf of PWP’s.

I scheduled an appointment to visit with Joe Dunn, Senior Legislative Aide to Senator Chris Murphy (CT)(D)

The opportunity to see the Senator personally was uncertain.He did a segment on MSNBC earlier in the morning and was involved with a good number of meetings with minority leadership regarding strategy to retain provisions of the current AHCA.

I was most appreciative to have a fellow Nutmeg State and MJFF Intern Andrew Dumond present for a portion of the meeting.Although not able to join until near the conclusion of our meeting due to multiple assignments, he made a good “second” impression with the Senator’s office.He presented a Parkinson’s Position folder to Joe Dunn.

• Connection with Senator Isaacson’s (GA, R)

With nothing but supporters of our position from CT, I hoped there might be a chance meeting with Senator Isaacson’s.Almost immediately upon my arrival to the Hart Senate Building, Senator Isaacson’s passed me with “walking sticks” in hand, making his way towards the Senate entrance with two staff members. I made a dash towards the Senator, and upon my second yell, drew his attention.With little time, I quickly reminded him of our previous introduction emphasizing our PWP association, and told him “We need your help”.After some traditional PWP banter, He said, “I’m doing the best I can.” I replied, “We can both beat this thing if we work together”.He excused himself, stating “It takes a while for me to get going”.

• Met with Joe Dunn Senior Policy Adviser to Senator Chris Murphy (CT, D)

• He said they’re fighting as best he can against Republican proposals on AHCA.
  
  I shared with Joe my conversation with State Senator Art O’Neill (R) (Minority leader) and the State legislature seemed apathetic of any hope that the State can offset Government cuts in Medicaid.
   
• Joe reported that the impact of the current package would lead to a 3-billion-dollar reduction to Medicaid in CT alone.  Assignment of Medicaid allocations will be based on a “Per eligible basis”, and the proposal holds allocations fixed, without consideration of known rising health care costs, inflation, and growth in eligible participants.  
   
• The Trump budget would cut 7 billion to NIH.  The Majority proposal rejects the Trump proposal and suggests an increase in the NIH Budget.
  
  There is much focus by the Senator regarding the number of individuals in the state that would lose health care coverage.  Murphy’s office is highly focused on retaining coverage for all Americans.
   
• I asked Joe Dunn “Who are swing votes?
  • West Virginia, Ohio, Nevada ~ Alaska & Maine currently in our camp.
  • Lee (Utah) and Rand (Kentucky) were mentioned as supporting the position of defeating the current bills have extreme conservative aims.

With Connecticut represented by a delegation fully in support of the Parkinson’s agenda, he encouraged home state members to call/write, family and friends living in swing states to endorse their representatives that remain firm against the current majority proposal. Joe praised Parkinson’s and MS are doing incredible work in representing their interest.

I asked Joe what needed to be done to get the Registry bill funded.   He expected it to clear Appropriations with the other 21^st Century Cure initiatives that were approved this September.

• Senator Murphy came in and thanked me for our support and presented me a letter to be read to participants attending the 4^th Annual Make A Difference Parkinson’s Symposium, July 29^th.
  
  He described the scene in DC as “It’s Crazy Out There” and then had to leave to make a speech on the Senate floor.I thanked him for his tireless support and dedication.

 

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Future reports will include updates on new resources available for Clinical Trial Transportation Program.