Open letter to the National ALS Organization

I watched the president of the national ALS organization giving an interview on the PBS News Hour the other day. They were discussing the fabulous success of the Ice Bucket Challenge. At that time, the organization had received over $53 million in donations. The president was thrilled with the donations, but she was also very happy that awareness of the terrible disease was growing. The long-term outlook for the organization was positive. There were plans to spend the dollars carefully—focus on research, treatment, and support for patients and families. I applaud the work of the organization, and really want to express my gratitude to all of those who have given their time, energy and money, and have participated in the Ice Bucket Challenge, the ALS Walk, and all of the other events that raise awareness and donations.

The one thing that bothered me about the interview was that the president spoke mostly of spending their new wealth on research. I understand that this should be a focus— it is my sincere wish that some treatment, cure, or prevention be found through this research, so that no one in the future has to struggle with this terrible, tragic disease. However, without sounding like "sour grapes" I would like to suggest that research does not help patients with ALS and their families NOW! — (there, I said it... )

I started to think about this, and I came to the conclusion that talking about research, funding research, is probably much easier to do than talking about and giving direct support to current patients and their families. Research is structured, focused, and the dollars spent can be documented and easily justified. Whereas, each ALS patient and their family is different. It's difficult to know what each patient or family really needs. To support the patient and their family successfully requires "boots on the ground" and grassroots coordination that a large national organization may not be able to do. Direct support is very expensive, time consuming, difficult to organize, document and justify. That's why local organizations and support groups are so important. I have to say that I have received much support from our local ALS Ohana  and the local chapter of the MDA – Mahalo! You know who you are.

So, I thought, what can I do to help the national ALS organization spend some of their donations on direct support – and I decided that I can offer a few suggestions based on my experience:

Subsidize Caregiver Support: Most ALS patients need 24-hour care. If we are lucky, we have family members and friends that care for us. However, this is not the case for everyone. Some ALS patients have to pay for caregivers. And, even if we do have family and friends to care for us, they need respite – we have to pay for some caregiver hours. Medicare and most insurance carriers do not cover this expense. Finding the funds for caregivers is a big worry and expense that I believe the national ALS organization should look at more carefully.

Train Caregivers: Taking care of ALS patients is a complex and difficult job. Whether the caregiver is a paid professional, volunteer, or family member, they need support and training. The national ALS organization could develop curricula and materials, including online resources, for caregiver training. The organization should provide funds for the local chapters and organizations to deliver these training sessions.

Subsidize the cost of medical equipment: Wheelchairs, ventilators, lifts, hospital beds, and all of the other equipment that ALS patients need to survive, add up to a big expense. Medicare and most insurance only pays 80% of the cost – that sounds pretty good until you realize that a ventilator, like the one I use to breathe, costs over $1000 per month to rent. That's about $300 per month for the patient. The cost of a power wheelchair is easily $20,000 or more – 20% of that... Well, I hope you get the point. All of this adds up. I believe the national ALS organization could help with these costs for durable medical equipment. We need to lobby Washington to find solutions to the rising costs of durable medical equipment.

Subsidize the development and cost of communication devices: Everyone can see the wonderful new technology on television and YouTube that allows paralyzed, even completely locked-in, patients to continue speaking and communicating with the world. The technology is there, however, it is still not available for the average ALS patient. It's very expensive, and must be modified to the specific needs of the patient. Medicare and most insurance companies are very reluctant to fund more than the most basic of these communication devices – and with the cost of healthcare skyrocketing, these communication devices are beginning to be labeled as non-essential. I beg to differ! Without assistive technology, I would lose my voice, my connection to the world. I believe that the national ALS organization can do more to promote the development of communication devices, and they should support the cost of these devices for the patients.

Provide Financial and Legal planning services: One of the most frightening things for my family when I was first diagnosed, was thinking about the financial and legal ramifications of the disease on our life going forward. The health issues were overwhelming, there was little time or emotional energy to spend on financial planning and legal documents. We tried to reach out locally, but have you priced the cost of a financial planner lately? Have you checked the cost for an attorney to draft a Will or a Power of Attorney? The expense is difficult to justify, so I believe that most ALS patients and their families probably just ignore these issues altogether, or try to do it by themselves – that's what we did. I believe that the national ALS organization could spend some of their donations on providing these services.

Patient advocates: Most ALS patients have difficulty coordinating their care, and it is very rare to find a healthcare provider that has case managers that really have the time and the expertise to have a positive impact. There are ALS clinics available in some areas, but for some of us they only offer limited services, are hard to reach or do not exist within our state. However, it's just not the availability of integrated care, it's also the availability of support when there is a problem. For example, when there is a dispute with Medicare or the health insurance provider over billing or services, the patient and the family has no one to help them. The ALS patient and family have enough problems just struggling day to day without having to fight a huge bureaucracy. I believe that the national ALS organization could do more to provide patient advocates.

Of course, my suggestions above are just that – suggestions. Some are probably just "wishful thinking" and others are no doubt already in progress. Whatever assistance ALS patients and their families can get is greatly appreciated. I am very grateful for all of support and assistance that I have received. My list above are just a few of the ways that I think the $53 million plus can be used to help ALS patients and their families NOW!