NEWS
The State of Maryland was planning to change the REM Case Management Program for 2006. Due to budget cuts, REM recipients were going to have to enroll in HealthChoice MCO (Managed Care Program) in January of 2006. Thanks to many letters and community support, this program has been extended until the end of 2006! This may be a battle, we fight every year, but here is why we believe this program is important.
Many spinal cord patients are a part of the REM program. Families struggle to care for their loved one, maintain their home and work. There are many situations, such as spinal cord injuries, that warrant and need these services. We are asking the politicians to put themselves in our shoes for one moment to realize what this budget cut means to us.
People in REM (Rare and Expensive Management) have specific diagnosis and therefore many specialized needs which require management by many specialists. With the REM program individuals have direct access to their physicians. In addition, the network for physicians participating in REM is greater than a MCO. By changing this, it could mean that a person may have to change to a different specialist if the doctor is not participating in the MCO Network. This becomes very hard for patients and families who have been under the care of a physician. Families would have to find a new physician in the MCO network, get medical records transferred and hope that you can find a provider that you are happy with and who has privileges at a hospital that you prefer for your care. Relying on an individual’s primary physician every time a referral is needed is not only time consuming and taxing, referral could potentially be denied! Not seeing a specialist with all the complex needs resulting from a Spinal Cord injury could ultimately mean the difference between life and death.
Our Personal Experience
David was in a MCO from November of 2004 to January of 2005 before he was accepted into REM. His mother contacted his MCO on three occasions and spoke with a customer representative requesting to speak with a Case Manager and never received a phone call back. We are extremely concerned about the quality of his care and the difficulty of dealing with the MCO network and referral process if the REM Program loses their current Case Management Program.
Ironically, David has a friend who has a similar diagnosis and his mother had referred us from personal experience into the REM program. She repeatedly stated that her son’s care was greatly improved and so much easier to manage after he enrolled into the REM Program. She encouraged us from the beginning of Dave's illness to enroll him into the program.
Our REM Case Manager (CM) and Coordinating Center has been extremely helpful, They are directly responsible for assisting Dave with his current medical care. He is participating in a Day Treatment Program for Spinal Cord Injuries at NRH. By the end of his first week in the program, he could see the quality of therapy that he is receiving and the results of the therapy are already obvious. The use of his left arm had already improved in one week. The CM also assisted with approval for his transportation to the program and for nursing care to assist him when he gets home. This allows his mother to continue working in her job, and not devastate the family more with a loss of income.
It is devastating enough for people and their families to deal with the medical complexity of their care. We don’t want the state to make it more difficult for them to receive the care that they require.
The legislation was introduced on February 16th with strong bi-partisan support in both the Senate and House led by Senators Arlen Specter (R-PA) and Tom Harkin (D-IA) and Representatives Mike Castle (R-DE) and Diana DeGette (D-CO). This supports the expansion of the Administration's stem cell policy, which will prove to be vital in allowing scientists to fully develop the promise of embryonic stem cell research. This legislation would enable researchers to explore the promise and potential that stem cells have to offer with proper federal regulations and oversight.
Embryonic stem cells stand as a crucial link to the scientific puzzle that may mitigate the pain and suffering of more than 100 million Americans and provide new therapies and other scientific opportunities for countless diseases such as diabetes, Alzheimer's, Parkinson's, ALS, heart disease, spinal cord injury and cancer.
When President Bush announced his stem cell policy in August 2001, he stated that there were 78 lines available for research. Unfortunately, today only 22 of those 78 lines are usable for research. Additionally, these 22 lines are all contaminated by mouse feeder cells, thereby making their therapeutic use for humans uncertain, and the small number of stem cell lines does not offer sufficient genetic diversity for application to the millions of Americans suffering from a wide array of diseases. Simply put, the current federal policy concerning stem cell research is compromised and does not enable this research to be fully explored.
Although there is a shortage of quality stem cell lines here in the United States, stem cells are available from excess fertilized eggs stored in freezers at in vitro fertility clinics. There are tens of thousands of these fertilized eggs available for research, and nearly half of infertile couples say they would like to see some good come from their unused eggs. The Stem Cell Research Enhancement Act would allow federal funds for new stem cell lines created from excess embryos donated to research through informed consent of the donors.
Over three years have passed since the Administration's policy was announced, and since then we have learned much more about the potential of stem cell research to save lives. Unfortunately, the limitations of the current federal policy have stalled progress here in the U.S. Scientists are reporting that it is increasingly difficult to attract new scientists to stem cell research because of concerns that funding restrictions will keep this research from being successful - the policy has stalled progress in America.
Meanwhile, this promising scientific field is moving overseas. We have already seen researchers move to countries such as the United Kingdom, Singapore, Israel, Sweden, and Australia, which have more supportive policies. It would be a shame to see such a promising field of research absent from our country, which is the world's leader in biotechnology.
Most importantly, the men, women, and children who are suffering from life-threatening diseases are engaged in a race against time. It is our responsibility to make sure that they benefit as quickly as possible from the very best that science and technology has to offer. Given the enormous scientific potential of human embryonic stem cells, I ask you to provide your leadership and co-sponsor the Castle/DeGette or Specter/Harkin legislation.
This bi-partisan, comprehensive legislation focuses necessary attention on the research, rehabilitation, and quality of life needs for the more than 2 million Americans living with paralysis. People living with physical disabilities want to be active in their community, but we need your help. Just consider this- the annual cost associated with disability is estimated at over $300 billion in medical care expenses and lost productivity (The Institute of Medicine's Enabling America). The tenants of the legislation are in-line with the initiatives advanced by this Administration: coordination, collaboration, and a reduction in research redundancies. During financially difficult times, the CRPA advances mechanisms to more efficiently spend current dollars. The CRPA has four components of action: * Encourages multi-disciplinary consortia style research through the National Institutes of Health (NIH) - connecting scientists doing similar work to enhance understanding and speed discovery of better treatments and cures. * Supports rehabilitation research to prevent secondary health conditions and promote restored function. * Builds quality of life programs throughout the country that will further advance full participation, independent living, self-sufficiency, and equality of opportunity for individuals with paralysis and other related mobility impairments through the Centers for Disease Control and Prevention (CDC). * Utilizes the Veteran's Health Administration to improve paralysis research by tracking data within the world's largest system of hospitals. This legislation creates efficiencies and encourages sharing of information and research to help people living with paralysis improve their lives. What's controversial about that? Christopher Reeve once said, "I understand first-hand how terribly frightening it is to suddenly become paralyzed. Being active one day and immobile the next thrusts you without warning into an entirely new existence. The changes are enormous and overwhelming."