Identified as having a rare and atypical breathing pattern called Biot's Breathing my pulmonologist recommended oxygen for my condition but warned me "get ready for a big fight". Little did I know I was about to embark upon a long, arduous process which more closely resembled an obstacle course than prior approval just to get the life-sustaining substance my doctor was to prescribe. As my respiratory symptoms worsened in the ensuing weeks, I began to wonder whether I might have a stroke or a heart attack by the time the underlying hypoxia was treated. One especially severe episode left me with tinnitus in my left ear and shot central nervous system pain down my arms and legs. There were nights I held on by my fingernails, wracked by severe central apneas, shortness of breath, chest and lung pain, faintness, sudden bouts of bowel urgency such that I thought I would crap my pants at a moment's notice, and even episodes of sleep paralysis in which I was fully aware I couldn't breath but was unable to move or do anything about it. At 2 AM I often found myself wondering whether I should go to the emergency room, or even whether I should be admitted to the hospital for my own safety. I was at home alone with a force that was playing "chicken" with my life. For over a month I white-knuckled it at home, every night hoping I would wake up the next morning, while my symptoms during the day became even worse than those I experienced at night, a few hours on, then a few hours off.
Several times I became very sleepy when I was out grocery shopping and actually fell asleep on my feet nearly falling to the ground.
Meanwhile my doctor and his nurse were trying to find a medical equipment vendor who accepts Medicare, which took nearly a month. Then came the first hoop to jump through.
In order to qualify for portable oxygen I had to take what is referred to as "the 6 minute walk test." If you can pass that chances are you can't go out anyway, LOL. What they do is hook you up to an oximeter to measure your blood oxygen level and have you walk back and forth down a hall for 6 minutes. If during that 6 minute time-frame you desaturate to 88% or below then you can qualify for Medicare to cover a portable oxygen unit. The technician kept telling me to breathe the whole time (more than was natural for me), so of course I didn't cut it, and as it was still early in the day my full spectrum of symptoms hadn't kicked in yet.
After several more weeks of respiratory agony Medicare finally authorized nighttime oximetry at home so that I could gain the "proper" evidence that I was desaturating at night. One company didn't respond, so my doctor's nurse had to call another. They were supposed to call me and didn't. Then one day they just showed up at my door with the oximeter and no explanation as to why it took so long. The other company then called wanting to bring their equipment over, so I had to tell them the other company beat them to it. It wasn't a total loss though since I had a very interesting conversation with the man on the phone about "compassionate use" letters, as he told me that he'd just received a memo that morning stating that Medicare could take a letter in the absence of sufficient data from the two tests if a doctor could state that;
1) There is no approved drug that cures the condition.
2) That other options have been tried and failed.
3) That oxygen would relieve the patient's suffering, has a likelihood of helping, and will give the patient better quality of life.
In the nighttime test I had to desaturate to 88% or lower for a total f 5 minutes in order to qualify for nighttime oxygen. That night I hooked it up to my finger, lay down, but didn't get much sleep, since this was the last test which ultimately would determine whether I'd get oxygen at all, and the pressure had me on the edge of my seat. The next morning I wondered whether I had obtained the information sufficient for Medicare's requirements and worried I may not have because I'd had so little sleep. To cover all bases I prepared my doctor to write a letter of necessity just in case, because at that point things were getting pretty rough.
A week later the results came in and it just so happened that I qualified under what they call "Group 1." In a few more days the equipment vendor brought out an oxygen concentrator, tubing and other parts. I felt relief within minutes the first night. Before I fell asleep I felt more energy, mental sharpness, and the shortness of breath was much less. I could feel the upper part of my lungs that had often felt stuffed start to ease up, cough improved, my nose was clear the next morning and even my baseline pain was reduced. I could tell that I had been hypoxic for many years because I can't remember when I felt that normal.
This was a good start, but I found it only carried over for a certain number of hours after I was off it the following day, and if I went out it wouldn't take long for the symptoms to return. On hot days I get winded now even sooner.
In addition I hadn't anticipated that I would be allergic to the plastic in the cannula that went in my nose after the 2nd day of use. After about 4 days I had a big pus-filled sore between both nostrils where the plastic made contact, and my body was mounting a big inflammatory response making my nasal passages swollen and the stuffiness returned. I tried a mask instead which did get rid of the allergic response since the plastic didn't touch the inside of my nose, but I found that there wasn't enough holes for exhaled air to escape and my face started to sweat pretty quickly (which kept me from sleeping too).
I went online to research this problem and found lots of reports from others about allergic actions to the plastic tubing. One person suggested on one of the forums covering the cannula and prongs with fabric medical tape, so I got some and decided to try it out.
This PubMed article documents this allergy in patients using oxygen cannulas;
http://www.ncbi.nlm.nih.gov/pubmed/10315103
The tape did the trick, although I notice that the sticky stuff eventually bleeds through and makes my nostrils a little sticky.
Apparently there is one company Topah Medical that sells cannulas made of Silicon and claims it is non-allergenic and non-carcinogenic. They're made by a company called Everest
They sell a 4 foot one for $41.00 and a 6 foot one for $45.00. Although pretty pricey compared with standard cannulas they are warranteed for 1 year, and can be boiled once a week without damage in order to sterilize and rid them of bacteria inside and out.
Apparently it doesn't work for everybody but seems not to cause a reaction in most people.
Meanwhile I am in the process of appealing Medicare's decision not to cover Benicar every 4 hours as is used in the Marshall Protocol for Sarcoidosis.
The response Humana (Georgia's default Medicare Part D provider) gave me was as follows;
Your request was denied
We denied coverage or payment under Medicare Part D benefit for the following prescription drugs(s) that you or your prescriber requested: Benicar 40 M TABLET 180/90
Why did we deny your Request?
We denied this request under Medicare Part D because:
Benicar has been prescribed for Sarcoidosis. Although the medication may have been initially denied at the pharmacy due to a quantity limitation requirement, upon clinical review it appears that the requested drug isn't prescribed for a medically accepted indication as stated in Section 1860D-2(e)(1)(B) of the Social Security Act by reference to section 1927(k)(6) of the Act. As noted in section 1927(g)(1)(B)(i) of the Act, this includes FDA-approved uses and off-label indications which are supported by one or more citations in the approved drug compendia (drug reference guides)-Micromedex Drugdex Information System and American Hospital Formulary Service Drug Information. The physician's prescribed use of this medication doesn't meet the criteria and isn't covered.
You have the right to appeal
If you want to appeal, you must request your appeal within 60 calendar days after the date of this notice. We can give you more time if you have a good reason for missing the deadline. You have the right to ask us for a formulary exception if you believe you need a drug that is not on our list of covered drugs (formulary). You have the right to ask us for a coverage rule exception if you believe a rule such as prior authorization or quantity limit should not apply to you.
Note that InHumana is provided the discretionary power to set aside these restrictions and that they chose not to (not only once but twice!) They are well aware that without this medication I will eventually die. Apparently that's perfectly OK with them.
I have now appealed it and been denied two times. Appeal number 3 goes to an arm of Medicare called Maximus Federal Services.
I have written the Secretary of Health and Human Services and am establishing a paper trail to prove the current Medicare regs aren't working for patients and that an amendment needs to be made to put such decisions back into the hands of patients and their doctors.
Both issues; the Medicare process for approval of oxygen and off-label protocols could be made alot more patient-centered if enough people wrote in to HHS, President Obama, and their legislators on the Federal level and insisted on it.
If you would like to give your input/support you can write her and the HHS Committee @
Sylvia M. Burwell
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
In many states DME (Durable Medical Equipment) companies have a competitive bidding process and this also hampers one's access to quality treatment, so if you're writing your legislators about oxygen be sure to ask that they vote to abolish that practice because it places priority on lowest price rather than quality service that is best for the patient. Medicare beneficiaries deserve better!
Representative Bernie Sanders from Vermont who is running for President in 2016 has been a consistently strong advocate for those on Medicare and Medicaid. In addition to Sylvia Burwell I have written him and President Obama regarding these issues.
If you yourself are ill then make your voice heard. If you are healthy then don't wait until you need it to write your representatives in Congress. Do it now so that if you should need one or both of these types of treatment the option will be there when you or somebody you love needs it urgently.
I am willing to take this all the way to the Supreme Court if I have to! Insurance companies are supposed to be there when you need them in such crucial times, not obstruct you from getting the care you need. They were never meant to make medical decisions in place of one's doctor.
