A letter to my elected officials in Washington regarding Medicare

Dear President Obama,

It's hard enough to have to struggle to live with a disease like ALS without having the frustration of dealing with insurance companies, health care provider organizations and medical device suppliers. In my experience over the last seven years, I have found that these companies are huge bureaucracies with little empathy for the patient or caregiver. The doctors and nurses are wonderful and caring—it's the organizations that are failing.

When you need help at the most vulnerable time, it's impossible to get coordinated care, direct answers and decent service. The main purpose of the person on the other end of the line, or e-mail trail, seems to be to complete their own paperwork or obligations for their job. After all, they must be able to meet the regulations forced upon them by insurance companies, Medicare and Medicaid in order to be paid. The patient's welfare is secondary.

My fear is that the Affordable Care Act is adding to this confusion and bureaucracy. One size does not fit all when it comes to patient care. I would like to share two personal examples with you in order to make my point.

First, I've been using a ventilator to breathe for the last six years. Without it, I would not survive. For the first three years, I used a simple BiPAP machine, often used for sleep apnea or other sleep disorders. About three years ago, my doctor was able to upgrade me to a better performing, safer, ventilator made by Resperonics (Trilogy 100). It's made a wonderful difference in my life, and I believe has been a strong factor in my survival. I was diagnosed with ALS in 2006. Most ALS patients perish within 3 to 5 years, I'm still here. My concern is the outrageous cost for this machine.

The medical supplier, Apria, bills Medicare over $4000 per month for the rental of this machine. Medicare cuts this down to an eligible charge of about $2500 per month. Medicare pays its 80%. I am left with a monthly bill of about $400 per month—this is a huge bill for my family to pay. At this rate, we will deplete all of my retirement savings in just a few years. I have been looking for supplemental insurance to cover some of this durable medical equipment cost, but most insurance plans do not. I'm still looking.

A quick search online and I found that the average price for a brand-new Trilogy 100 is about $12,000. If Apria is collecting about $2000 per month from Medicare, and an additional $400 per month from me, it seems to me that within six or seven months they recouped the entire cost for purchasing the machine. I understand that they are in business to make money. They do service the machine, though their quality of service is quite poor—a person comes every three months to check the machine and do some paperwork. According to my calculations, Apria will benefit greatly if I continue to live and they continue to collect these high rental fees.

The ventilator does not fall under the Medicare rule that once the equipment rental has surpassed the cost of the machine/equipment it becomes the property of the patient.

Does this seem fair to you? Doesn't it seem like the medical supplier is making an out of proportion profit in this situation? Shouldn't ventilators be eligible for the same patient purchase rule once the rental fees have paid for the machine? Once the medical supplier has recouped the cost of the machine, should not the monthly charge to Medicare be reduced? Shouldn't there be some consideration given to patients with long-term illnesses and the rental of expensive life-saving equipment? 

Secondly, I have been trying for almost a year now to get my hospital bed mattress replaced. When I first received the hospital bed, the mattress that came with it could not support my 200-pound body. According to Medicare rules, I was not obese enough to qualify for the more supportive mattress, but my doctors were able to get me a very good mattress with memory foam that supported me very well and was also designed to prevent bed sores—this was four years ago.

I was very grateful for the mattress, especially since I spend most of my time in bed. For the first three years, I was able to exchange the mattress for a new one each calendar year without any problems. I have had no bedsores!

Late last year, when I tried to get a replacement mattress we were denied. My doctor tried valiantly to work with my insurance provider, Medicare and the medical equipment supplier. The answer that we received is that Medicare rules have changed. Medicare will no longer pay for replacement mattresses. I was also told that according to Medicare guidelines, even if replacement mattresses were allowed, I am Not eligible for this same type of mattress—one that prevents bedsores. In order to get this type of preventative mattress, I must already have bedsores! Does this make sense to you? Shouldn't the idea be to prevent bedsores in the first place?

My current mattress is now starting to sag, it's getting old. It's starting to become uncomfortable, causing some back pain and I'm afraid bedsores are coming next. We have decided to purchase the $300 mattress ourselves. I know this doesn't seem like a lot, but it is to my family in our current situation.

Why was there this sudden change to the Medicare rules? Shouldn't there be some allowable co-pay for replacement mattresses? Shouldn't there be some consideration for patients with long-term illnesses?

I apologize for the length of this letter. I had a lot of frustration to get off my chest. I believe that the only thing we, as American citizens, can do is raise our voices and fight for better service when we can. If we have the option, then switch providers, but there's no guarantee it will be any better somewhere else.

I firmly believe in the principles of the "Affordable Care Act" and I applaud you for your efforts to help millions of Americans get health care. However, I have little faith that the new system will make any real difference to the high cost of care, poor customer service, the lack of individualized patient-centered care, and the complex and convoluted billing practices.

I ask you, to ask Congress to take a close look at Medicare, Medicaid and the Affordable Care Act rules and regulations, and whenever possible consider the impact on individual patients. Please strive to make our health care system fair and equitable to all.