No cure for ALS in sight

[Richard]

I agree with the Kathy Stitz post from December 7, 2020 at 12:59 pm ET about doctor neglect.   In my particular case, the doctor told me my diagnosis and then just sent me home.  Below are specific examples the ALS clinic failed:

1. Wasn’t assigned a case manager, a point person. After receiving diagnosis of ALS I should have been immediately designated a point person, who should reach out to me telling me what to do, when to do it and how to do it. I shouldn’t have to reach out to the Clinic.
2. Wasn’t given an ALS primer – paperwork on ALS or an identification of websites to go to (in a specific order), so to understand the disease, what to expect, research being done, self-help, etc.
3. Wasn’t immediately prescribed Riluzole. I had to request a prescription for Riluzole. From what I have read online, getting on Riluzole as early as possible returns the best results.
4. Wasn’t encouraged to try ALSUntangled recommended therapies. There is no cure for ALS.  ALS is a death sentence!  All the therapies that are not “we do not recommend” should be tried, together.  Trying every possible recommended therapy should be encouraged.
5. Wasn’t “handheld” through the SSA SSDI The SSA SSDI and Medicare process should start the day after receiving ALS diagnosis with a person to guide through the maze of SSA confusing, difficult to navigate websites where you are taken from webpage to webpage forgetting where you started from.
6. Wasn’t encouraged to sign the AMX0035 fast-track petition. I was informed by TodayALSNews.  There should have been a coordinated effort from the clinic.
7. Wasn’t encouraged to email my congressmen for ALS funding and treatment legislation, through websites such as https://stevensnation.com/
8. Wasn’t presented with any clinical trial orientation. I know there are trials, so working with my doctor I should be presented with what is available and what would work best for me.
9. Wasn’t given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t measure the decline progression.
10. Wasn’t questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. Gathering this information should be standard practice.  Reason, from what I have read online sporadic ALS has unknown origins.  Also, it progresses differently in different people.  It would make sense to me that the clinic(s) obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
11. Wasn’t made aware of the “Right to Try” Act.
12. Wasn’t encouraged to try Complementary and Alternative Therapies (CAM) As said before, there is no cure for ALS, so all treatment options should be on the table.  Even if you only benefit by the placebo effort, the end result is the same.  The bottom-line, you feel better and that’s what were all trying to achieve.

Bottom line…you’re either part of the problem or part of the solution.  The items I’ve identified above clearly point to being part of the problem.

 

[Kathy stitz]

Thank you for your comments Richard.  I am sorry you have not been pleased with your care either.  Those were great examples you gave about how your ALS clinic has failed.   Many things that you mentioned apply to me as well in terms of not being informed about issues relating to ALS.  We all want to feel as well as possible and I hope doctors will try to improve their care because improvement is needed.  Best wishes to you.

[Allen Lewis]

The reason no cure or treatment for ALS is in sight, and won’t be for a long time, if ever, is that it’s rare and non-contagious. The disease is yours and yours alone and you couldn’t give it away to your worst enemy if you wanted to. Malaria? Yellow fever? Smallpox? Typhoid? All now curable or controlled by vaccines. Even Covid 19. A vaccine formulated and already being distributed…in under ONE YEAR. Why? Obviously, those were pandemic-grade diseases with enormous political capital to reap, not to mention the potential to wipe out huge swaths of the human race. ALS? Most politicians have never even heard of it, let alone care about a cure. No, we are on our own, to live – well or less well – and then to die.

Allen

[Kathy stitz]

Yes, that’s very true, Allen.  It is very unfortunate and awful but that’s what the reality is.  People don’t care about illnesses until they themselves have it or a family member has it.  Since this condition is so rare, not many people care about finding a cure for it.   There are other illnesses that are affecting a lot more people so a lot more focus is directed towards those conditions.  It’s awful for us because we are suffering every day and we need a cure for ALS too.

[Amanda]

Our community, including our friends and family, can generate interest and help to raise awareness that will help all aspects of research and care. That is a big part of what the ALS Association does every year.  There is some promising research being done. We can help by volunteering for trials and being an active voice.

[Dagmar]

During this pandemic year, it certainly has been challenging for all rare disease groups like ALS to raise awareness and get noticed.

I wonder what creative ways and activities that you’ve seen other disease groups do, that has made an impact or had positive results? We can certainly look to other groups for ideas… What have you seen? Let’s start a list of ideas.

 

[Richard]

First, the people leading the ALS cure charge need to stop patting themselves on their backs for what I see is a clear failure.  As an example;

The other day I received an email from The ALS Association ([email protected]) touting their success about the House of Representatives passing the ALS Disability Insurance Access Act.  Below is a quote from their email:

“Over the last four years, YOU have helped build the momentum and support for this bill. From a single sponsor when it was originally introduced in 2016…”

Personally, I wouldn’t be very proud of the fact that it took 4 years to pass.  I’d be embarrassed!

Second, you know ALS has a publicity problem when the most famous ALS individual being publicized died 81 years ago.  Most people living with ALS today weren’t even born yet when he died. Steven Hawking is not any better as an ALS example, a longevity anomaly. Living, though poorly, 50 years with the disease sends the wrong message about the urgency in finding a cure.  There’s a need to highlight more recent, famous people with this disease.

The individuals leading the ALS cure charge need to take a good long, hard look at their methodologies of initiating/persuading Congressional bills, drug research, funding and FDA approvals along with public awareness.  A more radical approach is necessary. Past performance is indicative of future results. A new rule book needs to be written. This snail’s pace is unacceptable when the average ALS life expectancy is between 2 to 5 years and the quality-of-life expectancy is significantly lower than that.

 

[Duane]

Richard, I have to agree with you.  “The individuals leading the ALS cure charge need to take a good long, hard look at their methodologies of initiating/persuading Congressional bills, drug research, funding and FDA approvals along with public awareness.  A more radical approach is necessary.”   That what I also was saying, and who’s to say that a high-tech approach to this disease is what is needed.  “Only now, are we finally able to scan brains, look at neurons, and split DNA.”

Only now?  What if the ‘only now’  happened in 1979 or 1989 due to adequate funding in the 1940’s decade. How many lives might have been saved?  It was possible, but the opportunities were missed due to complacency, business as usual.

I am well aware about Neurology and Neurologists, and I don’t need a lecture or explanation about them.  And, there is no reason why they cannot advocate for the benefit of  THEIR  patients, regardless of why they became Neurologists.  Things change, everything is subject to change, but I guess that does not apply to them!

We all have our own opinions, and I have mine which says don’t accept the status quo.  A more radical approach is certainly necessary!  The approach to date has been a dismal failure.

[Amanda]

It sounds like there are numerous topics Of concern, justifiably.  We definitely need treatments and cures!! pALS need access to treatments in the trial Phases.  I also think that some doctors need to be educated in ALS and there needs to be a systematic plan on how to work with pALS. Does this exist? How can you get involved to bring about positive changes for the ALS community!