Listen to my songs:
Health Care Doom (lyrics)
Hope for the Disabled (lyrics)
A Cosmic Joke (lyrics)
Limp Log Blues (lyrics)
By Jeff Feldman, Santa Clara, California, jeff@newiic.com.
I used to be
Now, instead of Marketing Mike, I am Jeff Feldman, declared a legally disabled person by social security and Medicare dating back to 2000. I am fighting back by lobbying Congress for the disabled (backing the public option).
Me at the mixing board
The first song is a commentary on the health care mess by me, a 54-year-old disabled person, who’s used his God-given abilities (music and writing) to provide a rallying point for this most unfortunate group, the disabled. This tune, Health Care Doom, is a protest song aimed at Congress, the other a message of hope for the disabled.
The second song is intend to make disabled people feel better - it's called Hope for the Disabled.
This is all non-profit and I hope something positive will result from my fatal disease, Shy-Drager Syndrome\Multiple Systems Atrophy. The greatest hope of all is that I contracted this disease in the mid-90's and I have lived 6 years beyond my past-due date.
I’ve seen many commentaries and editorials on health care reform. However, most are by well-meaning, passionate and seemingly healthy journalists, not the disabled who can’t work through no fault of their own. The disabled endure the effects of the health care system the most. I’ve seen nothing in the health care debate from the seriously disabled; only short videos of disabled people being shouted down at town hall meetings, apparently by people that non-Fox television says are on the payroll of various health care industry anti-reform groups, according to investigative journalists and TV “all-news” channels.
Me with Ricky and Lucy, my Solomon Island Eclectus Parrots
and Best Friends
First, here’s some quick background on me. I was a very successful magazine feature writer, magazine editor-in-chief and ultimately president of a highly profitable Silicon Valley high-tech PR firm. This is where I found my material for Marketing Blues and Business Blues. During a 1993 round-the-world press tour, while on two immune system-destroying antibiotics, I contracted a very deadly fungus called aspergillus. It penetrated my brain through a birth defect in my brain shell. A couple of years later, all of my body-clock functions began failing. This is called Shy-Drager Syndrome and Autonomic Dysfunction, which is a part of that syndrome.
By 2000, my entire GI tract was dead, I could no longer respond to heat and cold and many other symptoms too gross for public consumption, other than 53 aspiration_pneumonias that will kill me in fairly short order, as the aspiration digestive acid always lands on the same spot of my left lung and will eventually penetrate though to my heart. I continue to aspirate, I am blind in one eye and can no longer walk without a cane. Soon, I’ll be in a wheelchair. I have neuropathy from head to feet and numerous digestive problems.
After my failing health forced me to sell my PR agency during 2000, I had to rely on my wife’s company insurance, Blue Shield of California. Although I was very ill, I continued to work until 2005, when it became impossible. My wife divorced me during 2005, with an agreement that we would remain married until the end of 2010 so I would continue to have insurance to pay for drugs that cost over $1,000.00 retail per month. The specifics are detailed in my song, Health Care Doom (lyrics).
My pill bottle collection
During 2007, to my immense shame, I finally filed for SSI/Medicare disability, despite the embarrassment one would expect from a workaholic who fought tooth and nail for everything. Three weeks after filing, I was awarded full disability, with the date of disability dated September 1, 2000.
The Medicare Parts A&B card came a year later on June 4, 2008. A year later, I received a huge package from Blue Shield. It contained dozens upon dozens of letters claiming that as of June 4, 2008, Medicare became my primary health care provider. These letters were copies of documents sent to my health care providers demanding repayment for payments issued by Blue Shield since the June 4, 2008, the issuance date of my Medicare card. Blue Shield said Medicare was my primary insurer for everything other than drugs, as I hadn’t enrolled in Medicare Part D.
I called Blue Shield and told them I was a victim of identity theft when insurance cards used social security numbers as ID numbers. (Medicare uses social security numbers as IDs.) This was the truth. Blue Cross denied my appeal not just once, but twice. Meanwhile, I received a letter from Medicare saying that Blue Shield of California was my primary provider. I had dozens of calls from understandably crazed yet compassionate health care vendors. The emotional stress was devastating.
At that point, I was in insurance Hell, with two companies claiming to be secondary providers. Had I enrolled in Medicare Part D, with the donut hole, Blue Shield would have stopped paying for my drugs. I live on alimony and social security. So this would have been the ultimate disaster.
My weekly pill dispenser
When Blue Shield denied my claim example bill and the insurance vendor to my ex-wife’s corporation took over. Blues Shield reinstated me for only one, irrational reason: my ex-wife’s company had over 100 foreign and domestic employees. Nothing more.
This has horrible implications: if you are disabled, under 65 and your spouse’s employer has less than 100 employees, corporate insurance providers can deny you. It’s legal, at least in California, as far as I know.
When my Blue Shield insurance expires at the end of 2010, I won’t know what to do if I live that long. They’ll probably deny COBRA for some obscure reason, but I’ve been quoted unjustifiable premiums. Medicare Part D will render me broke. My understanding is that the Congress never even funded Medicare Part D and that volume discounts from the drug companies are not allowed by law.
I have seen the CommonCause lists of donations to members of the Senate who are against Medicare for all (the public option). What is missing from this entire debate, from a disabled person’s point of view, is compassion. I know these donations to Senators from insurance companies are legal, but to me, they are kickbacks.
This so sad.
Please contact your Senate representative to apply pressure or bombard the media
with the protest song, Health Care Doom.
Most of the recent health care changes do absolutely nothing for me. I am on very expensive drugs that still won't be covered once I enter Medicare Part D when I am divorced. Further, Obama gave up on the public option before the real congressional debate even began. Most of the changes signed into law go into effect long after I will have a died miserable death, totally broke.
Rallies and protests don't work. Only one item proves successful: Mailing a letter to your local member of the Federal Congressional House of Representative and another letter to your two Senators. One letter should be postmarked from the Senator’s state and the Representative's home district. Write your return address on the envelope. The letter should be addressed to the Senator and Congressman and other than that, the letter need be only one sentence: "You work for me and not the health care lobbyists." Then sign it and mail it. Nothing scares legislators more than letters from displeased voters.
For donations to push Congress for the public option (Medicare for all) please donate to Health Care for America NOW.
If you want to make a contribution for research into my disease, Shy-Drager Syndome with Multiple Systems Atrophy, please contribute to:
SDS/MSA Support Group
8311 Brier Creek Parkway
Suite 105-434
Raleigh, NC 27617
1-866-737-5999
Shy-Drager.org
Yours truly,
Jeff Feldman,
Santa Clara, Claifornia