Veterans Clinical Trials

[Bigd4571]

Veterans I am attempting to put pressure on Congress to act capacity necessary to determine if there’s something related to military service that leads to two times the rate of ALS among its population. I have prepared a letter to push congressman to create laws to allow veterans to attend clinical trials. It’s not only helps veterans, but it helps the entire ALS community. Please copy and paste this letter and sent to your state representative. I will provide hyperlinks to each representative following the letter simply kick click the link. Copy and paste the letter with your




The Honorable [Representative’s Full Name]
[Office Address]
[City, State ZIP Code]

Subject: Support Needed for ALS Veterans’ Access to Clinical Trials

Dear Representative [Last Name]:

As a U.S. veteran and someone living with Amyotrophic Lateral Sclerosis (ALS), I’m writing to urge your support for a critical and just cause: improving access for veterans to participate in clinical trials.

ALS affects veterans at twice the rate of the general population. Despite this, veterans are not consistently prioritized for inclusion in ALS research studies funded by the National Institutes of Health (NIH) and other federal programs. Ensuring the inclusion of veterans in this research is not only scientifically necessary—it would not require additional taxpayer funding. It’s simply a matter of proper representation.

In addition, current VA travel policies do not reimburse veterans who must travel to participate in ALS clinical trials outside of the VA system. While this may be appropriate for many conditions, ALS is a terminal disease with limited treatment options and no cure. Denying travel assistance in this context prevents many of us from participating in studies that could extend or improve our lives.


I respectfully ask you to support a policy update that would:

• Prioritize veteran enrollment in all federally funded ALS research, and

• Allow travel reimbursement for veterans with terminal illnesses (like ALS) participating in approved clinical trials, regardless of location.

This is not a handout. This is about fairness, access, and the chance for survival. Veterans stepped up for this country—we’re asking now for the country to step up for us.

Thank you for your service in Congress and your continued support for veterans.

Sincerely,
[Your Full Name]
[Military Branch, Service Dates (optional)]
ALS Patient & Advocate


[Email Address]


[Phone Number]

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[Nikki J]

How do you envision trials prioritizing veterans? They are essentially first come first served as they screen until the trial is full. A period when only veterans can screen? Slows enrollment, delays results. Or setting a quota? What if it is not met? Again delay. I also question whether a trial full of veterans would get the same results as a heterogeneous trial. If veterans are different that could impact results
Travel reimbursement is another issue and might improve access

 

[Bigd4571]

Veterans have two times the rate of disease . The federal government pays for the studies. They could allocate more money for veterans if you want public support for ALS it will come from veterans.

 

[lgelb]

Getting veterans to support more research is a laudable goal.

As Nikki points out, though, stacking the deck to have a greater % of veterans in trials or reimbursing travel for some participants but not others would slow the trial and skew the data, and that's the last thing ALS research needs. It would also be questionable morally.

Cumulative toxic exposures are generally thought to have a relationship with the development of ALS, and that is why ALS is considered a service-related disability. However, we'll likely never have a neat equation for which exposures under what circumstances in what people at what ages lead to ALS, which is now generally considered a disease where multiple things have to happen and there are numerous patterns of onset.

Like many other conditions, we are probably going to know more factors that increase risk in the future, but not the whole story. But when you consider that smoking tobacco used to be considered a healthy habit, for example, we have come some way. And research into earlier diagnosis and more effective treatment usually helps address the "why" insofar as we can.

Unfortunately, US research jobs and funding have been cut drastically, including in ALS. Most every drug out there owes part of its history to federally-funded projects and many projects have been nipped in the bud. And everyone with ALS is affected by changes in drug approval policies, including the changes we are seeing this week in vaccine policy.

So I would include everyone, as much as veterans, in the need for advocacy that resists the rise of anti-science, anti-vaccine, anti-controlled-research, anti-evidence thinking and actions, which are imposing a Middle Ages approach to our 21st century diseases.