10/27/09
This letter was in support of the American Medical Association's (AMA) Effots to stop Medicare cuts.
Open Letter To The President, Congress, Insurance Companies
I am aware that healthcare reform is being discussed by the President and Congress and I would like for my concerns to be taken into account. I have several concerns. First, Nevada needs more trained, dedicated Doctors to ensure that all Nevadans are afforded the best quality of care they deserve. Second, the Medicaid/Medicare system(s) needs an over haul. This includes the eligibility process for Medicaid and the payment reimbursement system for both Medicare and Medicaid.
When applying for Medicaid, it takes an act of Congress to qualify. If a person makes a penny over the States Medicaid income cut off, they cannot receive “full Medicaid”. Eligibility for Medicaid should also include the need for benefits. For example, If a person has been diagnosed with a rare demyelinating disease or terminal illness, which renders them disabled, they should be automatically eligible for “Full” Medicaid benefits. In Nevada people who receive benefits through Medicaid, do not have direct access to their Case Manager, they are given a number for their local office which is busy continuously. Thus making it nearly impossible to maintain contact with their Case Manager, which in turn can result in the lack of continuity of care.
My daughter, who is disabled, is on Medicare and recently qualified for Medicaid. It took over a year for her to qualify for “Full” Medicaid and nearly two years for the State of Nevada to find resources to compensate me for providing care for her. My daughter was diagnosed with a rare disease called Devic’s Disease. It took a mis-diagnoses, and another attack before she was finally diagnosed. If my daughter had a dedicated Physician who was more concerned with providing the level of care she needed rather than the bottom line, she would not have had an acute attack of her disease and she would be walking thus allowing her to continue to be a productive person. However, due in part to Medicare not reimbursing Doctors in a timely manner and in part to her Doctors lack of motivation to research her symptoms, she did not get the proper treatment and was turned away from other specialist due to them not wanting to take on Medicare patients. It took over a year to find a Rheumatologist for my daughter. The number of Rheumatologist in Nevada is small and nearly all of them refuse to take Medicare patients and the other half refuse to take Medicaid patients. It has been reported to me by Doctors and patients that the process of receiving payment reimbursements are what cause Doctors not to want to take people who are Medicaid or Medicare recipients.
I had to fight night and day to ensure my daughter was provided with the level of care she deserves. At a time when I should have been allowed to provide 100% of my time, energy, love and support, to my daughter, I along with my mother, had to instruct her Doctors in how to request services/treatment from Medicare/Medicaid and having to call my daughter’s insurance company to ensure that they knew the services she needed were imperative and to make sure the services would be covered. Instead of grieving, We were fighting with her Doctors, who wanted to give up on her, trying to make them understand that there was hope and making them understand that we must utilize every measure to ensure she could lead a productive life.
To many times I have heard people with rare disease, or terminal illnesses, report that there insurance companies will either pay for treatment for a limited amount of time or not at all. For example, they (insurance companies) will pay for certain treatments for 12 months or less. I know that when my daughter needed physical therapy, her Physical Therapist told me that if he did not see significant improvement, medicare will not pay for what he calls “maintenance”. How can one see “significant” improvement in four weeks? There are varying degrees of Devic’s Disease and most people with the disease, need physical and occupational therapy for more than (4) weeks. After she was discharged, I had to once again step up to the plate. After working with her for one week, she was able to sit on the side of her bed for twenty (20) minutes and stand. While she continues to be paralyzed, she has shown “significant” improvement. I have been the primary care-giver for my daughter, which means I am no longer a productive member of society. Another example of restrictions and limitations placed on individuals who are Medicare have placed on them is the way in which they receive services. My daughter needs monthly Methylprednisolone due to her disease. It took months before she was able to receive her infusions on an out-patient basis. She had to be in the hospital or in home care. This set up often interfered with her out-patient services.
As an Advocate, I hear the horror stories of mothers, who have to watch their children suffer due to the red tape and politics of insurance companies. There is nothing sadder or heart breaking than to watch, helpless as your child suffers knowing that all it takes is for someone to see them as human and do the right thing and provide them with the treatment they deserve. I say nothing is more heartbreaking other than to watch them die! Something needs to be done right now! Health care reform is a necessary ingredient to solving this problem. Reform should NOT include budget cuts to the Medicare/Medicaid Program(s).
It is time to show support for those Doctors who are dedicated, motivated and trained by not cutting Medicare Payments and it is time to see the disabled, terminally ill, individuals with rare disease as human beings and ensure they have the best medical care they deserve. There are children mother’s fathers, wives who suffer. There are husbands, grandparents, sisters, brothers who are suffering for what? They suffer because, of politics, and red tape. We need mandatory coverage for those who can provided medical proof of their illnesses along with identification as to why the treatment or services they request are necessary. I implore Health care providers, Insurance companies, Political leaders to do everything in their power to ensure every American is provided adequate, affordable insurance. In a Country that is as wealthy as America, you would think that keeping her citizens well and healthy would be of great importance. Not withstanding individual responsibility.
If Congress imposes more budget cuts on Medicare and or Medicaid, what is the motivation or incentive for the Good Doctors to continue to see Medicare/Medicaid Patients or to accept new Medicare patients? Congress should support patients access to care as part of any Health Care System Reform Bill. To ensure continuity of care, improvements for Medicare/ Medicaid should include effective ways of making payments to Doctors in a timely manner, competent Risk Managers, Auditors, Case Manager/Claims Adjusters to handle the demands of the job. Improvements should include rewards/incentives for Doctors to continue to treat Medicare patients and to accept new Medicare patients. Oversight and accountability is a must as well. As the Parent and Daughter of Medicare recipients, I must let you know that the goal of improving the Medicare and Medicaid Programs should be considered rather than budget cuts. My daughter and my mother’s health is very important to me. Right now both my mother and daughter have good Doctors and I would like for it to stay that way.
Sincerely,
Shelia J. Sheckles
Founder & CEO
SistaMoon Foundation for Devic’s Disease
