The MSA Coalition respects the views of all members of our groups. Given the relevance of the following issue to the MSA community, we are sharing this important information. Individuals are encouraged to research facts and act accordingly based on personal beliefs in consideration of action on this item.
The MSA Coalition recently signed on to letters sent by the National Organization for Rare Disorders (NORD) to House and Senate leaders opposing proposed changes to the Orphan Drug Tax Credit. The letters urge Congressional leaders to oppose the changes to the Orphan Drug Tax Credit (ODTC) that were included in the House Ways and Means Committee’s portion of the Build Back Better Act. If included, the new provision would negatively impact the ability of rare disease patients to obtain an FDA approved drug that has been proven to be safe and effective for their specific condition.
Specifically, the Ways and Means portion of the Build Back Better Act includes a provision that would curtail the Orphan Drug Tax Credit for qualified clinical testing expenses by removing this critical incentive for all but the first approved orphan use of a drug. The tax credit would therefore be available for only the first approved orphan use of a new drug, and not for any subsequent use, thus diminishing research into rare disease uses. Over 90% of rare diseases lack an FDA-approved treatment indicated for the specific rare disease. Each time a new orphan use of a drug is added to the label of a drug, more rare disease patients receive assurance that the drug is safe and effective for them.
Here are links to the NORD letters:
Senate Letter: http://www.multiplesystematrophy.org/…/ODTC-Letter…
House Letter: http://www.multiplesystematrophy.org/…/ODTC-Letter…
Here is the NORD link that will help you contact your members of Congress if you wish to do so:
Please remember that everyone has different views, and any and all comments should be careful to maintain respect for the views of others.
By Betty Martin
My name is Betty Martin. I have lived with my husband, Jerry Martin – for nearly fifty or sixty years now – in Lynnville, Tennessee.
I had Parkinson’s Disease, but then I was faced with Multiple System Atrophy (MSA). I’ve had it now for about ten years. Each day is a struggle, but with the help of my husband and daughter, Christy, I’m able to meet each day with a new challenge.
As I ponder over the last thirteen years, there have been many ups and downs.
In 2003, I was sitting at my desk, and my right forefinger started jumping. I passed out and off I went to the hospital. I got out of work that day.
I was told that I had “POTS” which stands for Postural Orthostatic Tachycardia Syndrome – what a word – which controls your heart rate and blood flow.
Three months later, I was told that I had Parkinson’s. Not getting any better, I went back to the doctor. Three doctors confirmed I have Multiple System Atrophy (MSA) also known as Shy-Drager Syndrome. That did it. I sat in the doctor’s office and cried.
“Why me, Lord?” I asked.
But why not me? I’m no better than anyone else who has MSA. I just have to fight a little harder. I was not ready to give up, but my battle was not over.
In October 2014, I was faced with more bad news: breast cancer. With the help of great doctors and all my family and friends, they pulled me through hardships once again.
It’s not been easy. Each day is a struggle going in and out of the hospital with fainting spells. Sometimes my feet just simply don’t want to move. I walk with a cane. I can’t run or jump rope, but I have a lot to gain.
On December 27, 2020, I was diagnosed with COVID and Pneumonia and back in the hospital I went.
It was “touch and go” for awhile with so much against me, but the Lord is still not through with me.
“You’ve come so far. Don’t give up now,” were the words that got me through.
With love in my heart, I’ll pray for you, and you pray for me. We’ll beat this disease, and one day, there will be a cure for us.
So, never give up. Let’s fight and live and thank our Lord for helping each of us.
Each morning, I walk outside to look at the flowers, and yes, listen to the birds singing in the trees.
With gladness in my heart, I thank my Lord for hearing my cry, and for giving me another day to fight, to live, and to help someone else along the way.
By Cathy Chapman, Patient Representative, the MSA Coalition
The MSA Coalition Annual Patient & Family Conference is coming up on September 30 – October 2. Reflecting back to the time I was diagnosed in 2012, I was overwhelmed by the fear of the unknown and where to turn for guidance, knowledge, and support. For my family, it was grasping for an understanding of multiple system atrophy, and for others, it meant denial.
After having attended these conferences in person and virtually since 2016, I have found compassion, knowledge from the top medical professionals, and supportive and understanding friendships. For my family, not only did they gain clarity on what I was facing, they found guidance and support as care partners.
We are not alone but part of the MSA family on this journey together.
The MSA Coalition Annual Patient & Family Conference is Sept 30-Oct 2. Register here for free.
By Elaine Douglas, The MSA Coalition Board of Directors
Dignity is one of the most important aspects of being human. Simply, dignity is about being seen, heard, and acknowledged for who we are and treated as if we mattered. The realities of having MSA can threaten a person’s sense of dignity. As care partners, we have a key role in helping our loved one maintain their sense of dignity.
This role is important throughout the MSA journey. But there is no more critical time for focusing on this role than at the end of life. One article from a hospice agency explains that “[n]ear the end-of-life, most people have less control over their life due to illness. Therefore, caregivers must act in ways that help preserve the person’s sense of dignity.”
The article goes on to identify key aspects of dignity at this part of the journey. These are:
- Respect, which includes self-respect, mutual respect, and respect for privacy.
- Autonomy, which involves having and providing choices, as well as competence and independence.
- Empowerment, which can involve self-esteem, pride, and modesty.
- Communication, such as explaining and understanding information, both verbally and non-verbally.
Choice is a critical component of this phase in our journey. Do they want a feeding tube? A tracheostomy? DNR? When would they consider palliative care? Hospice care? And as death nears, who do they want with them? Are they considering Death with Dignity? The process of finalizing advanced directives can help direct your discussions about these decisions. Most importantly, it’s a way for you to learn what they want.
What if you disagree with their choices? You can have open and authentic discussions … maybe many of them. You can share research, information, stories, and feelings. But ethically and legally, patients have the right to make their own healthcare decisions. So, listen and learn; then honor their wishes.
Honoring our loved one’s choices about what they want – and how they die – is the ultimate expression of love and respect.