Clearly, there were many parties involved in crafting the letter and getting the 200 signatures of other members of Congress. Nonetheless, the letter called for a response to pointed questions from CMS on or before October 1st. I've written my contacts at both King's and Collins' offices to ask what the contingency plan is should CMS miss the deadline. So far, no answer.
As individual advocates, and even the advocacy groups formed by professional associations and organizations, we should be prepared with a unified strategy assuming CMS does not respond satisfactorily to the letter from Congress by Oct. 1st. WE MUST BE PREPARED TO MAINTAIN THE PRESSURE ON CMS TO ENGAGE IN AN OPEN, HONEST DIALOGUE FOR CHANGE!
If CMS maintains their current position of obfuscation, blaming manufacturers of SGD's and pointing to the National Coverage Determination, and the various individual advocates and industry and professional advocacy organizations don't coordinate our efforts, any change will take longer - and ALS patients don't have time to waste.
As the line from the movie Gladiator says, "As one!"
http://politicalnews.me/?id=30211&keys=SGDS-ALS-NEUROLOGICAL-DISEASES
• I have change to 4 doctors in the last 16 months. I can't find a doctor that cares about my health. They walk in to the little room with a laptop on their hands, don't listen to you and walk out in 15 seconds. The last doctor told me : I wound be surprise if you have posted cancer" and they game a phone number to call and find out the results of the blood test. Is this what they call healthcare? Where is the care? I'm 76 years old I have paid and still paying for Medicare. I take $126.00 from my social security. Can you explain to me where the care is? I’m very disappointed with the Medicare and advantage plan of Humana. I keep on getting this mail about Wellness but my doctor doesn’t care. The sad thing is that I’m stock with Humana for a year, this is not fare. I started working in 1954; Medicare was established by 1965 so I have paid in to Medicare and still paying. Social Security deducts $126.00 every month from my money for Medicare. Jet I can’t get the care I think I deserve from a care provider. I’m getting ready to change health care plan when the enrolment period comes around. What is the problem you ask? My doctor wants for me to have a prostate biopsy. I went to the specialist but they had to stop because the camera they insert hurt so they want to do total Anastasia. I have been reading and talking to my son and friends about it and I have some concern. I’m 76 years old my PSA is 3.4. So I call the doctor’s office 3 days ago. I talk to the PA doctor assistant after I explain to her she told me she will pass the massage to the doctor because he was off and he will call me. 3 days went by and I don’t get a call back. I call again and the receptionist tells me there is nothing on my record about it and she probably didn’t toll the doctor. I know I’m a spit in the ocean as far as money is concern for any doctor but is that is the case why not tell me I can’t take care of you. Maybe Humana should stop spending money on flyers and stamp so they have money to pay the doctors that take care the senior’s. To my opinion doctors don’t get pay a sufficient amount to give the patients time so they can address these issues. Also when you sign up for a plan and you don’t like it you are force to wait a year to change to another advantage plan. Thank you Jose Carrasquillo
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