Submitted by Jesse from Arizona in response to “What Are Your Issues”:
“I have a spinal chord leaks, cyst, dura tears, disc problems and am struggling to get health care and insurance. I am waiting for Medicare. I can’t seem to locate any Dr’s who are willing to take me on as a patient. They say they can’t help me or my problems are too complicated.”
Jesse -
We continue to fight for the elimination of pre-existing condition clauses which prevent people with disabilities from getting the care they need at a reasonable expense.
Sorry your having such trouble and we’ll keep up the fight.
Best -
Paul Tobin
President
United Spinal Association
This problem will only get worse in my opinion. While you wait for medicare, secondary conditions could occur and usually do. Congress is not addressing the 24 month waiting period because it would cost too much but how many people have to go to the ER just to get basic care or life saving treatments?? Common sense is not so common when dealing with budgets. Spend a little more now and save lots in the end by keeping people healthy! Once you get Medicare, good luck in finding a doctor that will accept you as new patient. I remember calling around and being told “were not taking new medicare patients at this time”.
I am a 39 year old female with both Congenital Muscular Dystrophy and Spina Bifida T-10.
If you live in an area with a college that has a medical school try checking there and see if they are taking new Medicare patients. This type of doctors office is a teaching hospital where medical school students are beginning their practice under the guidance of the medical school staff, so you might not have the same doctor forever but I have found that some of these doctors work out really well becasue they have the lastest information that is available. I actually use a medical school hospital in my area. I use their urology clinic and have found that the doctor that I see there is very knowledgable when it comes to the bladder issues that arrise form having spina bifida.
I also use a second doctor assoaiated with a differnt teaching hospital. At this clinic I use the pulmonology clinic. I was extremely lucky in the case also in getting a doctor that is familiar with the pulmonary function problems associated with muscular dystrophy.