You know you are a battle hardened CALS when...

[GilWest]

You read photo essays about ALS, look at the pictures of the PALS, compare their equipment to yours, and wonder what insurance they have and why yours won't pay for it...

 

[gooseberry]

So true!!!!

 

[Dave K]

Battle-hardened is right!

We are one of the families who have a lot of equipment, but we have had to fight for nearly every piece of DME that has been prescribed to my PALS. Her power wheelchair, patient lift, sling, tilting commode chair, fully electric hospital bed, and lateral rotation mattress have all been the subject of coverage denials, which we have been forced to appeal each time. We have won all of our appeals, but the delays and the frustration and stress of the fights have been miserable. I can only imagine how much harder it is for CALS who don't have any fight in them.

The fundamental problem is that there currently exist no clinical guidelines for prescription of durable medical equipment for ALS patients. I have asked MDA/ALS and ALSA to devote some effort to creating such guidelines, but they have ignored me. (And they call themselves advocates. Hah!) If such guidelines could be adopted by the medical community, then it should help to avoid the kinds of problems that we have all had, because there would no longer be any grounds for denying coverage.

No legislation is required to make clinical guidelines. They are written by health care professionals, but once they are adopted they become binding on insurance companies and the government.

If you are truly battle-hardened, then you should join this fight and email ALSA president Barbara Newhouse and demand that ALSA devote some energy to the creation of clinical guidelines for DME. Her email address is:

[email protected]

 

[lgelb]

Dave,

Payors' DME/HME coverage criteria may use clinical guidelines as references (endnotes) but in no way are they mandatory -- let's not kid ourselves. Nor would you want them to be since they are often several years behind the times due to the time it takes to plan/convene/meet/ratify/publish.

Moreover, clinical guidelines are normally developed under the sponsorship of clinical associations, e.g. the American Academy of Neurology and similar groups ex-US have published guidelines for ALS care. I don't think we want the ALSA, an advocacy group, publishing "clinical" policies that would be, rightly, ignored. Look at what happened in Lyme disease when advocacy and clinical medicine both jumped into the casserole dish.

However, as you pointed out, coverage criteria, as with all plan documents, can and should be challenged as medical necessity suggests.

 

[Purplespider]

You read photo essays about ALS, look at the pictures of the PALS, compare their equipment to yours, and wonder what insurance they have and why yours won't pay for it...

It is a wonder why the equipment that you need is not covered and it should be covered by the insurance company. I wanted something medical for myself and I thought that it would benefit me personally, but the insurance company would not cover it; so I had to go outside of the insurance company in order to get it. It was not a lot of money because I got it in used condition. I think that you can get equipment through the durable medical equipment company and Amazon and you can also ask for gently used condition. I hope that helps you. I hope that you get your equipment soon.

 

[Dave K]

Payors' DME/HME coverage criteria may use clinical guidelines as references (endnotes) but in no way are they mandatory.

I don't think we want the ALSA, an advocacy group, publishing "clinical" policies that would be, rightly, ignored.

coverage criteria, as with all plan documents, can and should be challenged as medical necessity suggests.

Where a prescription for DME meets clinical guidelines for medical necessity, then absent a clear, express exclusion, there is no basis for denying coverage. In this way it is indeed binding under every law in every jurisdiction. Therefore, if clinical guidelines for DME for ALS Patients are developed, it will be impossible to deny coverage when those guidelines are met. Without clinical guidelines, bureaucrats charged with reviewing claims have license--and perhaps even a duty--to challenge medical necessity, too often leading to trouble and delays for PALS. Too often they refer to guidelines that have been developed for patients with other conditions, such as spinal cord injury, brain injury, or stroke, even though following those guidelines can result in improper denials of DME for PALS. (Example: current clinical guidelines for wheelchairs, which were not developed with any consideration for PALS, are geared toward keeping people in manual wheelchairs as long as possible because premature use of power chairs is associated with worse outcomes. Too many PALS have their power chairs denied or delayed because of this. There are many other examples.). The current system of forcing PALS to argue medical necessity in the absence of relevant clinical guidelines is the root of many of our problems.

ALSA does not publish clinical guidelines, but it does organize and fund efforts that can result in their development. In fact, ALSA hosts an annual Clinical Conference to engage ALS/MND healthcare professionals and offer current information on best practices and guidelines. Imagine how many DME denials and delays ALSA could help us avoid if they would put development of DME clinical guidelines on the agenda for this conference. See The ALS Association