Letters to Congress: Doctor Access. Need Feedback & Help.

[oceiv]

Background: A group of us discussed what the patient community could to do advocate for governmental change for ME/CFS in the post-IOM era. We decided to create a project, which could appeal to people with a wide-range of opinions on the IOM report. We asked the question: Despite our differences, what are our common goals?

One of the answers was a research funding letter. The letter is near complete.

Feedback is now needed below for the second letter about ME/CFS Patients' Access to Doctors.

Also really needed are people to help get the project over the finish line: feedback on this Doctor Access letter, other help with planning and logistics of getting the project completed and small tasks along the way. Let me know if you'd like to pitch in.

I'm currently looking into how to automate our sending letters to congress, with a cc to the health agencies. I've contacted @JenB to look into how her upcoming #MEAction can help. I don't know how often she visits PR. If anyone is in touch with her and can let her know, it would be of great help. The automation tool will determine how we can send the letters and may influence if we need to add intros to each. Automating the sending process means that patients, family and friends can send their letters with one or a few clicks. The ease of the process may help get more patients to be able to send letters.

My rough draft of the Doctor Access Letter (without intro) is in the next post.

Since I took the usual late-night spot of this other advocacy thread: please support the Daily Vote To Help Nat'l ME/FM Action Network Win $2,000, too.

 

[oceiv]

Here is my rough draft of the letter to congress (with cc to health agencies). Your input, feedback and suggestions would be very helpful.

Enable and Increase Patient Access to Doctors. Add ME/CFS to the ADA

“This is an all-too-common, complex disease that needs to be diagnosed” the IOM panel chairwoman recently said. “84 to 91 percent of patients…are not yet diagnosed.” “Less than one-third of medical schools include ME/CFS-specific information in the curriculum.” “[O]nly 40 percent of medical textbooks include information on” ME/CFS.

CDC research showed that ME/CFS “patients who were ill for two years or less were more likely to improve, making early detection and treatment of CFS of utmost importance. The longer a person is ill before diagnosis, the more complicated the course of the illness.” Only 32% of patients were diagnosed in 1 year or less. The plurality, 36%, took between 1-5 years. 33% waited 5 to over 10 years for a diagnosis. Congress needs to take concrete action to improve the entire course of ME/CFS patients’ disease by getting them diagnosed sooner.

There are merely two dozen ME/CFS medical experts nationwide, for at least 1 million patients. But most ME/CFS patients don’t have the physical energy or money for travel to an expert. Patients seeking local medical care/diagnosis are regularly, turned away, misdiagnosed or told that they having nothing wrong. Local doctors who do treat ME/CFS, often prescribe treatments that exacerbate the disease or don’t “know how to deliver appropriate care.” ME/CFS patients are trying hard to get medical care, but often get refused. Patients with similarly-disabling diseases can get local medical access, diagnosis and treatment. For 20 years, there’s been no substantial increase in ME/CFS doctors’ numbers or the percentage of patients being diagnosed/treated. In 2015, medical discrimination still exists for ME/CFS. Only congressional action will stop the medical establishment from ignoring this devastating disease.

Multiple Sclerosis has 12 approved disease-modifying treatments; ME/CFS has zero. However, ME/CFS experts can provide regular symptomatic treatment and can make a big difference in patient lives. Of the paltry 9-16% of patients who get an ME/CFS diagnosis, only a small portion are able to get appropriate regular medical treatment. Without access to experts, most patients get no symptom management, which in turn worsens patients’ prognosis. Congress should implement concrete steps to ensure doctor access for our underserved ME/CFS patient population.

ME/CFS patients have greatly-increased rates of early death from heart disease, cancer and suicide. They have a 29% greater chance of getting lymphoma. Recent studies abroad on using a lymphoma drug to treat ME/CFS have produced marked disease improvement. But right now, most ME/CFS patients aren’t even able to get regular and appropriate medical care.

This is a dire yet silent health emergency and an American moral crisis. Previously, when disabled and sick patients were being refused care and treatments by doctors, congress acted. Please, add ME/CFS to the Americans with Disabilities Act. Then, demand that our health agencies fund a program for our current ME/CFS doctors to train more ME/CFS doctors. These actions could help patients get access to diagnosis, treatment and could ultimately help save lives. Time is of the essence. We can’t wait for help. Please add ME/CFS to the ADA and appropriate the sustained resources to fix this dire and morally important doctor access problem for ME/CFS patients.

Edit: I'm correcting minor errors as I catch them.

 

[taniaaust1]

What an excellent letter!

May I use this letter myself in my own country with some modifications (if I ever get around to it)? This problem is all over and isn't just an American issue. I'm currently like bashing my head against the whole system here and your letter could be useful.

I also like how you are just focusing on one main issue in the letter as I think it makes the point trying to be made all clearer. In my own advocacy efforts, I've often found I've overwhelmed the people I've been trying to get to understand by bringing too many issues up at once.

 

[oceiv]

Thank you, @taniaaust1 . Of course, you may use this letter. In fact, it would make me quite happy. You could replace the ADA with an equivalent law in your country. Hopefully, once we get the automation issues answered, a whole bunch of us can send letters at once.

 

[Oredogg]

You might consider also including something re: the economic burden, as citing the IOM report:

"ME/CFS patients experience loss of productivity and high medical costs that contribute to a total economic burden of $17 to $24 billion annually. "

Much of this could be attributed to lack of access to CFS literate health practicianers. And quite frankly, money talks. Improving access, and getting earlier, more accurate diagnoses and treatments, will help streamline care and reduce the number of useless and even harmful doctor visits, unnecessary treatments and inappropriate medications.

 

[oceiv]

Good suggestion, @Oredogg . Your first point is in the research letter. We have to find out if, with the automation tool, we can customize letters and if the letters need to be sent separately or if they can be sent together if people so wish.

I like your phrasing on saving medical costs. Congress does focus often on saving medical costs (sometimes to patients' detriment, but this time it could be to our benefit).

 

[aimossy]

info@meaction.net is the email address for ME Action I think. @oceiv I think they want people emailing them there regarding anything to do with ME Action.

 

[oceiv]

Thanks, @aimossy . We're also looking into any other tools to automate congressional/governmental contact and allow for users to customize their letters. If anyone out there knows more about these automated tools, please post here or send me a PM.

Once we send out the letter, people like @taniaaust1 and others can customize a version for their own countries, if they wish. But in the unlikely chance that groups or organizations want to use all or part of the letter, please contact me first.