Well, it was a very long process, but on December 20, 2012, Ohio, I believe, became the first state in the Nation to sign into law, legislation recognizing March as Multiple System Atrophy Awareness Month. This piece of legislation, originally titled House Bill 184 (H.B.184) was signed into law by Governor John Kasich in a ceremonial event in the Governor’s Conference Room with my wife, Susan and myself present.
I thought in addition to making this announcement in this post, I would describe the events that took place leading up to this special day for others that may want to approach their state for the same legislation. With this piece of legislation, it opens doors to funding from the NIH, National Institute of Health. Even in his comments made during the signing, Governor Kasich mentions the need for additional funding for MSA research as well other diseases that cause so much suffering.
I contacted a friend of mine, Jarrod Martin, who was at the time, State Representative for the district that I resided in. Jarrod had watched my physical decline and one day we sat down so I could fully explain to him life with MSA. I explained the difficulty I experienced getting the diagnosis since it involves so many facets of your body. I also told him that it is reported that those suffering in the United States with MSA is only 50,000, but I strongly believe that those numbers are extremely low only because this disease is so under or misdiagnosed. I really believe that our numbers are much higher for those that are suffering from this horrible disease.
Representative Martin did his own research on MSA and drafted the initial Bill and introduced it to the Ohio House of Representatives on March 31, 2011. Once the proposed legislation was read, Jarrod introduced me to the House. I was asked to stand and there was applause. Now, some educational notes: The Bill must pass three considerations in the House before it can be sent to the Senate. Being introduced to the House satisfies the first consideration. The Speaker of the House, William Batchelder, then took action and assigned the Bill to the Health and Aging Committee.
When the Bill was to be heard in the Health and Aging Committee, Jarrod and I appeared and gave testimony why this was so important. Well, Jarrod read the proposed legislation and then turned the floor over to me. The Committee, made up of both Republicans and Democrats, were very sympathetic. They asked questions of me pertaining to my journey to get to this diagnosis, symptoms, physician knowledge, or lack thereof, and insurance coverage cooperation. I was able to describe my life before MSA, what physical and mental challenges I am facing now living with this disease, and how it will affect the rest of my life.
Each member of the Committee were permitted to ask questions, and I encouraged them to ask me personal questions since I knew if I could get them to see this issue on a personal basis, not just as another piece of legislation, it would be more effective. They asked if there were known causes, triggers, or ways to prevent someone from getting this disease. They asked how cooperative my insurance company was in allowing me to seek treatments for MSA. I then spoke to them the words that every MSA patient dreads, “I am terminal. This disease will take my life and there is nothing at this time that anyone can do to prevent it. I am going to die.”
The Committee was very moved and appreciated my candor. You could tell that each of them were pondering what they would do if they found themselves or a loved one in my situation, and saying a prayer that they would never have to find out. The Bill passed unanimously out of the Committee on May 18, 2011.
The next step took a long time to achieve. With 99 members of the House, all proposing legislation, emergency measures that effect the health and welfare of society, and housekeeping items, a Bill to recognize a rare disease was well below their radar. So, on May 8, 2012, the report from the Health and Aging Committee was presented to the entire House of Representatives and a vote was taken. Once again I was introduced to the House. When the vote was taken, ninety four of the ninety-nine members were present and the Bill passed with 94 yay votes. It was unanimous. We were on our way to the Senate to start the process again.
The Bill was then read, for first consideration again, on the Senate Floor on May 9, 2012 and was assigned to the Health, Human Services and Aging Committee by Senate President, Tom Niehaus. I was there for this historical date also.
On November 21, 2012, the Bill was to be heard in the Health, Human Services and Aging Committee. Representative Martin was unable to attend. This was a very bad MSA day for me. I didn’t know how I would ever be able to speak to them and make them understand how much this legislation would mean to so many people. My speech was slurred, my vision blurred, and the dizziness and weakness was at full force.
Susan took my hand and told me not to be embarrassed by the outward symptom MSA was presenting this day. She somehow thought it was a blessing. She went on to explain to me that by my symptoms being so visible that day, it would give the Committee members who had come to know me, a greater vision of how difficult life with MSA really is. The Committee Chair, Senator Oslegar had seen my struggle to walk to the hearing room from the Senate floor where Senator Chris Widener had introduced Susan and myself, so he moved my testimony to the beginning of the meeting.
Once the Bill was read, I was asked to come forward and give Proponent Testimony. Susan stood up, grabbed hold of my arm and helped me to my feet. We slowly walked to the podium. I apologized to the Committee for my condition and the Chair said there was no need for an apology. I explained to them that MSA had control of my life today, and with their permission, Susan would read my testimony. Chair Oslegar told us to do whatever we needed to do and the Committee would be acceptable.
Susan started the testimony and this is what she read:
“Chair Senator Oslegar, Senator Carfaro and members of the Senate Health, Human Services and Aging Committee, I appreciate the opportunity to present sponsor testimony on House Bill 184.
Florence Evans Ginnan, Springboro, Ohio
Michael Wilcox, Dayton, Ohio
Paul F. Law, Belpre, Ohio
Pat Bell, Beavercreek, Ohio
Bruce Chamberlain, Dayton, Ohio
William Zakour, Beavercreek, Ohio
Frank Cervone, Kettering, Ohio
These seven names are names you may have never heard of if not for us being here today. Every one of them are Ohio residents however it affects over 100,000 people. Every one of them suffered from MSA. MSA has taken the lives of four of them. It will take the lives of the other two and it will take my life too.
I am Frank Cervone, I am 50 years old and I have MSA.
On October 11, 2008 I was a healthy man, 304 pounds; I repossessed tractor-trailers and was a Councilman for the City of Fairborn. On October 12, 2008, that all changed.
On April 28, 2010, I was diagnosed with MSA and I now weigh 155 pounds. Unfortunately I am unable to drive and I am unable to be left alone. I have trouble walking, breathing, talking and swallowing. I can pass out without warning.
My doctors tell me that one day I will fall asleep and never wake up.
MSA is taking my life however it is not taking my will to live. It is my goal to educate others on the devastating disease that takes the lives of so many people. This past March, the first-ever MSA awareness race in Ohio drew more the 200 runners and raised $3,350.00 to help find a cure for this rare neurological degenerative disorder. I am proud to be working with Dr. Charles Ide, a researcher at the Western Michigan University. Their research team has spent a decade working with researchers at Vanderbilt University medical school and the New York Brain Bank at Columbia University to focus on understanding and treating MSA.
I have provided you an information sheet from the National Institute of Health that describes MSA.
We would appreciate your support and would be happy to answer any questions.”
For a few minutes the room was deathly quiet. No one moved. I too was unable to speak. Although this is my story, hearing the pain in Susan’s voice read it made it more real at that very moment than I had ever felt. Eventually Chair Oslegar spoke. He thanked me for my effort and courage to continue to fight for the MSA community. He turned the meeting over to his fellow senator committee members for questions or comments.
Senator Peggy Lehner was the only one to speak. She spoke of how she had followed my journey as a Fairborn Councilman struggling with this disease. She admitted she had not really explored the realms of MSA until her friend, a wife of another local politician was diagnosed. She spoke remembering the challenges her friend was now facing. She also thanked me for my continued fight and the Chair called for a vote. Once again, the vote was unanimous.
This completed all the big hurdles in getting the Bill passed. The next step was the Senate vote. We were sitting on pins and needles as time was ticking on and I knew if it didn’t get to the Senate for a vote and get signed by the Governor by the end of the year, we would have to start the entire process over in the House.
I spoke with Senator Chris Widener about my concerns and he promised to make it his mission to move the Bill along as quickly as possible, even if it meant him hand carrying it through. He contacted each of the Senators and asked if they minded fast-tracking the Bill and moving it to be on the agenda the next day. Each Senator was on board with his request and he then just needed the blessing of the Senate President. Senator Niehaus, understanding that I, as with all MSA patients may not have next year, approved the agenda change.
On November 28, 2012, Senator Chris Widener, after once again introducing Susan and I, read House Bill 184 for the last time. This Bill, when introduced by the House was sponsored by three Senators. Once Senator Widener finished reading it, all thirty three senators raised their hands to co-sponsor it and when put to a vote, all 33 senators voted in the affirmative and once again there was an unanimous vote for MSA!
The next step in the process of this legislation was for the Bill to go to the Rules and Regs Committee to evaluate the Bill to make sure it didn’t violate any Constitutional laws. Unfortunately there was no way to see where the Bill stood while in this area. Time just seemed to creep. The final days of the year were approaching. We were down to the wire and our expiration date was fast approaching.
Finally, late afternoon on December 18th, I received notification from Representative Martin’s office that the Governor would be signing our Bill on December 20th in the Governor’s conference room. The day I had been waiting for for twenty-one months was finally within reach. A giant step for MSA!
December 20th came just as it always does, but for me it seemed like those three days were a month long. I had went over everything I knew about MSA and what points I wanted to make with the Governor over and over in my head. This was going to be my one and only time to have the Governor’s ear and I wanted to make sure I didn’t disappoint the MSA community.
Here is the video of Frank meeting Governor Kasich.
Representative Martin, his legislative assistant, Representative Hackett, his legislative assistant, Susan and I were led into the Governor’s conference room. Governor John Kasich sat in a red velvet chair at a dark mahogany desk with a folder and several ink pens on it. The room was very large and just off the Cabinet Room. There was a matching row of cabinets behind him. On the left side of the cabinet was the American Flag. On the right was the Ohio flag. On each side of the cabinet was gold sconces with three lighted globes. The carpet, as in all the rooms of the statehouse bore a floral pattern. There was quite a bit of room in front of the desk in the room for those who were there to appear before him to stand.
I had met Governor Kasich a few years ago at an event in Greene County. He did not seemed to have aged. He looked like he was where he belonged. Obviously, he was meant to be our Governor. I noticed he had an injury to his right hand. His ring and pinkie fingers were taped together.
Representative Martin introduced me to the Governor and we had some discussion about MSA. He addressed his legislative aide about another neurological bill he had recently signed and asked if I would work with Dr. Winslow, a neurologist from The Cleveland Clinic, on the similarities of the diseases and put together a report outlining the diseases and what is needed for research for him to review.
Governor Kasich repeatedly said that more funding was needed for these types of diseases and that he would be more conscious of this in future budget plans. With that, he took up one of his pens and with the power invested in him by the State of Ohio, he signed H.B. 184, naming March as Multiple System Atrophy Awareness Month into law. It will officially go into effect on March 27, 2013.
After the signing, the Governor was gracious enough to take several photos. We were trying not to impose and take very few photos, but the Governor must have understood how important this was to the MSA community, so he encouraged several photos of him with the legislators responsible as well as with Susan and myself.
With this groundbreaking event, I have been contacted by several others in the MSA community asking how they too can get this legislation accomplished in their respective states. I tell them all, start with you local State Representative. Tell them the Ohio 129th General Assembly has passed H.B. 184. It is just a few sentences, but can make a huge impact. Ask them to get involved because with MSA, you just never know who might be next.
December 20th was a day I will always remember. Not only for me, but for all those who have lived MSA!