Institutions doing research

[Brenda]

I hope someone can help me. I was diagnosed with HOCM with SAM about 4 years ago for the first 3 years I had no real change in status.  I have always been symptomatic even before diagnosis, just didn't know what was wrong. Anyway, my meds ( verapamil & zebeta) are no longer working even at the maximum doses and it is getting more severe.  My doctor suggested the alcohol ablation procedure as my best bet instead of the open heart procedure.  My problem is my insurance will not cover this and I certainly do not have the money to pay for it as I cannot work as I am with this.  I would like to know if you may know of any place doing this procedure as research where I maybe able to get it done on the research funding or for a small fee that they will work with me on paying. Any help would really be appreciated.

[Cleveland Clinic, MD]

Thanks for sharing your story.  There are many more like you out there not to mention the 43 Million uninsured Americans!

[Deb]

Dear Dr. CRC,

It is wonderful to hear docs say this !  I worked in a Medical College/hospital in Milwaukee, that was SELF INSURED, if we stayed there for care it was paid 100%, if not we paid out of pocket and deductables to a certain amount.  I had numerous complications from pacer surgery and by NO fault of my wonderful doctor they said he can no longer treat me, also other reason I won't go into !!  I was forced to go else where for care, as he was the only EP doc there at the time.  He tried to fight it and he was told that, if you want to keep your job.....DUMP the patient !!!  He did however, behind their backs refer me to another doctor out of state.  I asked the College to cover my care, and they said NO !  They were not forcing me to get care else where.  But to make this story short, I contacted everyone I knew how and they all said, "they are self insured and they make their own rules" !!!   No one can force them to pay anything !!  I was also told that I could change to the new doctor when he got there, which I was told months later I could not!!  I paid TON'S of money for my Cobra insurance and they still said can't and won't pay you anything.  We spent $1000's of dollars to get healh care, and we have no way to get it back !  I have written my Senator and I intend to do it again !!  Thanks for all your wonderful support, I thank you from the bottom of my heart ! GO DOCS GO !

[Cleveland Clinic, MD]

I am outraged by the decisions that accountants are making concerning the health care of a patient.  This is a timely conversation as several patient's bill of rights are before the Senate today.  I would encourage everyone to email their Senator today (senator_lastname***@****) and voice their support for the Bill that would allow patients to sue HMOs for refusal of appropriate care.

[Deb]

Is there a reason why your insurance Co. won't cover an ablation?  This is not an experimental treatment. I would think VS the open heart surgery and a life of meds, they would cover it.  I think if you got your doctors behind you, they will cover it.  It will be a pain to do this, but I think with the right letter from your docs it will be ok.  I had plastic surgery done on a pacemaker scar.  I thought it would not be covered. The doctor I went to was the Chief of plastic surgery.  He wrote a letter to the insurance Co. and they covered it.  Doctors today, will be more then willing to fight insurance companies for their patients.  I think they as well as the patient have had enough of the insurance companies telling them how to practice medicine.
Do just what Dr. CRC said to do.....Give them H_ _ L !!
It is so nice to see docs telling patients to do this !!!
Thanks Doc !!  :-)

[Cleveland Clinic, MD]

Alcohol ablation of the septum is only being done as a research protocol, however this does not mean that it is free. There are costs of the lab time, equipment, blood tests, etc and it all adds up. I would suggest working with your insurance company to see if you can get them to pay for the alcohol ablation.  Show them the cost of the surgery that you will have to have if you can't get the ablation.  Your doctor will have to help you with documentation, need for the procedure, etc.  Good luck and give 'em hell.