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JohnKelly

Member
Joined
Sep 11, 2007
Messages
19
Reason
PALS
Diagnosis
10/2004
Country
US
State
California
City
Carlsbad
Hello Everyone,

I have had a small group PPO policy with Anthem Blue Cross (formerly Blue Cross California) for over 10 years. The benefit had always been 70% reimbursement for all durable medical equipment if purchased in network, and 50% for equipment purchased out-of-network. I have been in the process of ordering modifications to my motorized wheelchair due to the progression of my hand weakness and got a very disturbing surprise.

As of the renewal date for my small group policy, the benefit for durable medical equipment has been capped at $2000 per year. Durable medical equipment includes wheelchairs, hospital beds, ventilation equipment, catheters and many other supplies needed by people with ALS and other chronic disabling conditions. As all of you know, $2000 is peanuts compared to what these things cost.

I called the company and the representative I spoke to did not know of this change prior to my call, but looked it up and told me that the change took effect with all their small group plans on July 1, 2009. I filed a grievance but know that it will do no good.

Many of you are on Medicare due to the waiver of the two-year waiting period after qualification for Social Security disability for those with ALS. But for those who wish to work as long as they can this will be devastating. It is also devastating for me because my diagnosis is lower motor neuron disease only (my neurologist calls it progressive muscular atrophy with an overlapping peripheral motor neuropathy) and I therefore do not qualify for the waiver.

This is really an outrage because of its impact on the disabled community. Durable medical equipment is largely a benefit for those with disabilities. People with ALS who want to remain productive. The spouse of an insured who has multiple sclerosis. Children who have muscular dystrophy, cerebral palsy and birth defects. Anthem Blue Cross has just pulled the rug out from under all these insureds. I'm not naïve and I know that insurance companies can unilaterally modify benefits. But this time I think they have really gone too far by targeting the disabled.

Those of you who have anthem Blue Cross policies please check your DME benefit. I would like to know whether they have done this in every state and to every type of policy. I am so outraged that I have not been able to formulate a plan yet, but I plan on raising hell about this and would welcome any assistance or ideas you may have.

Thanks in advance, John
 
I was just talking to an American friend, who is a reporter, about your issue. I am as equally outraged as you are. One thing you should do is contact any local state or national politicians that represent your district and inform them exactly what happened to you just like you told us. Meanwhile reach out to local newspapers and magazines that cover health insurance and medical issues and tell them what happened too. And also she believes every state has a regulatory agency that deals with insurance issues so contact them too and present your case the way you did here on the forum in a clear and concise way and be sure to include all of your contact information.

You can also contact CNN, look on their web site to see how you can submit an iReport story. With all of the debate going on about health care in the U.S. you are likely to get some interest in your story.

Also contact the ALS Association in the meantime to see if they can provide you with the proper equipment on loan. Also ask them if they can provide you with any contact or suggestions for people that you should be telling your story to.

Good luck, John and good for you for fighting this. You have an important story to tell and you should be sharing it.

All the best,
Rosella
 
Well Rosella, you finally put your name in print.
I like the advice that you gave to John. Kudos to you.

John, I would make a list of contacts at the various organizations that Rosella has talked about , and then get a hold of your insurance company once more. Explain that their new policies basically cuts you off at the knees. Ask them what if their mom was facing the same issues ? Make it personal. Also , if they give the same lines , mention that you have no choice but to ask the public for help.

Is this wrong approach ? I am not sure as I live in a different country with different rules. BUT THEY STARTED IT FIRST !

Why must health care be about the bottom line ?

my 0.02 CAD = 0.0183251 USD

Glen
 
Progressive muscular atrophy is a variant of ALS, your neuro would probably put ALS as a diagnosis to get you whatever you need. Talk to him/her.
 
John, it's outrageous and even more so that you were given no warning. You've gotten great advice here. I'll only add to contact MDA (Muscular Dystrophy Assn.) which helps out some orphan neuro diseases as well as MD. They've come through gangbusters for me.

Also, get in touch with local TV stations. They usually have clickable "contact us" buttons to send e-mails about story ideas.

Let us know if there's any way we can help.
 
Thanks everyone for your responses. I've been thinking about it all day, and I plan to contact the California Department of Insurance, my congressman, my two US senators, the MDA, the ALS Association, some news outlets, the disability rights division of the US Department of Justice, and a few class-action lawyers. In law school they taught me that for every wrong there is a remedy. I aim to find this one.

John
 
We are all behind you 1,000%.
 
I am sorry to hear what you are going through. My mother's official diagnosis was PMA, but we didn't have any problem getting Medicare processed quickly. I submitted information from the National Institutes of Health website to "prove" that PMA has the same outcome as ALS. I included it along with all of the diagnostic/medical information in my mother's application.

You might see if it helps to include this page with your Medicare application:

Motor Neuron Diseases Fact Sheet: National Institute of Neurological Disorders and Stroke (NINDS)

I wrote up an explanation of how PMA still causes respiratory failure. In fact, by the time my we applied for Medicare, my mother was already on a ventilator. The main thing to emphasize is that the American way of classifying these diseases is more "divisive" than the British description (motor neurone disease).

Please email me if you need any help. I haven't been on here much lately, but I'll try to check on here again tomorrow.
 
Indeed we are! South Dakota CALS has your back!
 
Totally agree... contact Senators Boxer and Feinstein asap! As well as your Congressional representative. Make LOTS of noise... especially right now when your (and my) Democratic Senators are working so hard on health care reform! Good for you for putting that law school education to work on your on behalf! Good luck... good fighting.. and keep us updated!
 
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