Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, March 1, 2016

"I Want You To Act. Why Is This So Difficult?"

The exchange below was added to the petition last evening. The writer is the woman with ALS who wrote the petition.   It is an exquisite statement of the urgency gap in the fight against ALS.

Feb 29, 2016 — Barbara Newhouse, President & CEO of the ALS Association, responded to my petition and letter dated 02/23/2016. In it, she attempts to pacify me with generalities of support, an accounting of past accomplishments and a nonspecific pledge of action devoid of urgency. Needless to say, I am deeply unsatisfied. Below you will find my response letter dated 02/27/2016, which I sent to her via email. It contains the entire content of her letter and my paragraph by paragraph response.

Here it is (warning: it’s lengthy…):

Dear Ms. Newhouse:

Thank you for responding to my letter. I must say, I'm greatly disappointed in the lack of urgency in your response and the blatant disregard of the means by which your organization must act. The lives of ALS patients could be improved immediately, with nearly zero effort on your part and minimal cost to your organization, if you were to merely execute the improvements detailed in my petition. As I stated in my previous letter, I am well aware of the ALS Association's accomplishments and the excellent work of your chapters on behalf of the ALS community. This, however, has no relevance in addressing the current home care issues. Your organization's customers are me, Anthony and every ALS patient and their respective families. It is your responsibility to listen to us and act on our behalf, and we are telling you we are suffering. It is unconscionable to not understand the magnitude of this matter and to not act immediately.

I have included your letter below. My responses are listed in bold following each of your paragraphs.

Letter via email from B. Newhouse, dated 02/25/2016:

Barbara Newhouse wrote:
Dear Catherine,
I’ve read through each and every comment in your letter and agree with you wholeheartedly that people living with ALS are suffering and families are struggling. These are the reasons I accepted my position with The Association – to help people living with ALS and their families.

My response:
If you haven’t already done so, please read the 200+ comments posted on my petition by ALS patients and their families. You cannot read them and remain unaffected or dispassionate. If you have already read them, it is unimaginable you would not agree acting immediately is paramount.

Barbara Newhouse wrote:
Please know that we strongly support policies that expand the availability of long-term care services, including both skilled and non-skilled home health care services. We have a long history of fighting for people living with ALS on this issue. As you may know, we championed the Community Living Assistance Services and Support (CLASS) Act to create a federal program to provide long-term care insurance, including access to home health services. The legislation was enacted into law as part of the Affordable Care Act. Unfortunately, the program ultimately was repealed because it was not financially sustainable. We are continuing to fight for greater access to long-term care services.

My response:
It is one thing to “strongly support policies”, but to act on them is something altogether different. The work you cited was ultimately repealed. Your policy team is regularly noted as supporting efforts, but I cannot think of one legislative initiative where it has positively affected me and my family. We are living with ALS today. I am asking you to strongly support providing the tools to your chapters today to ensure they are capable of assisting those of us you serve navigate the Medicare system. In contrast to the repealed act you cited, there are Medicare policies in force today which can greatly help people now, yet the chapters do not have the training or knowledge to help us.

Barbara Newhouse wrote:
Please also know that we are creating new home health care educational and training materials and improving our existing ones – a process we will finalize in the next couple of months. In doing so, we’re working with our Chapters, other organizations, and home health agencies and partners. The purpose of these materials is to provide training and educational resources that can supplement clinic visits, provide information to family/friend caregivers, educate on self-management practices, and aid in decision-making process for patients and caregivers.

My response:
See above response. Although you have only been with the ALS Association for two years, ALS patients were told by your care services coordinator in March 2015 the ALS Association was doing what you just stated by May 2015. Pardon my skepticism, but it has been nearly a year since your self-imposed deadline, and nothing has happened. The declaration in your letter is no more than a regurgitation of exactly what was said then. In the interim, many of us have spent countless hours fighting for the care we are legally entitled to through our current system. When days feel numbered and each breath is a struggle, should we really be spending the precious time we have left battling for our benefits? Shouldn’t the largest ALS advocacy association in the nation be our “go to” for help?

Barbara Newhouse wrote:
Does more need to be done? Absolutely. We are in this together. The ALS Association will continue to actively distribute educational resources, offer care/respite programs via our chapter network, and lead policy efforts that result in even greater access to home health services for people with this disease. I am delighted that you copied Clare and Blair on this correspondence because I just had a conversation with Clare about the need for greater collaboration among ALS organizations on the legislative and regulatory front. The FDA Guidance Process is an example of where bringing multiple stakeholders (people living with ALS, other ALS organizations, researchers, industry, etc.) to the table is making a huge difference.

My response:
Does more need to be done? With all due respect, what has been done? While policies are being observed in Washington D.C., we are dying. People are constantly talking about collaboration. That’s wonderful, but if that collaboration doesn’t trickle down to the people the ALS Association is supposed to serve, it’s worthless. I copied Team Gleason, because they were instrumental in helping Anthony and I get covered communication devices. I don't expect them, however, to create a support system to guide ALS patients through their benefits. That is the responsibility of the ALS Association. It's not surprising Team Gleason and others want to help with this effort, but does it really take collaboration? Why hasn't action been taken after being promised to us for over a year?

Barbara Newhouse wrote:
I would welcome the opportunity to discuss these issues with you in greater detail whenever is convenient. I have also copied our Chief of Staff, Brian Frederick, and Calaneet Balas who is working with me on all things collaborative. In the meantime, thank you for your comments and concerns. We are here fighting for you, Anthony, and everyone else living with ALS.

My response:
I apologize if this sounds indignant, but I am not interested in discussions. Everything you need to correct systemic home care issues is detailed in the petition. I want you to act. Why is this so difficult? You have over $100 million dollars off the backs of people living with ALS. Your partner home health group, Bayada, has also not served our community well. Patients are being perpetually told by them care is not covered when, in fact, it is. While we lie here dying, we and our loved ones are being forced to become Medicare and insurance experts. I truly appreciate your organization collaborating for us, but I would prefer it if you would sit on the phone with Medicare for two hours for me when I have to appeal another request for benefits. 

End of letter via email from B. Newhouse, dated 02/25/2016

I look forward to your response and immediate action.

Catherine Scott
ALS Patient

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