Program:
The Myasthenia Gravis Treatment and Advocacy Center
- Budget:
-
$175,000
- Category:
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Health Care
- Population Served:
-
Physically Disabled nec
Program Description:
The Myasthenia Gravis Treatment & Advocacy Center aims to provide the best medical care, in one central location, from health care professionals who specialize in MG. The neurologists who staff the Treatment Center are experts in MG and they guide the patient’s entire treatment which can include: medication, surgery, plasmapheresis, and other therapies.
The Center offers patient-centered care coordination provided primarily through a Nurse. The nurse is accessible to all patients and is capable of answering questions, resolving medical problems. She also facilitates patient assistance programs (prescriptions, transportation, etc); addresses general concerns; manages the Treatment Center schedule; coordinates the patient’s care with his/her PCP, Endocrinologist, Rheumatologist, and other health care providers; as well as preauthorizing testing and prescriptions with third party vendors including insurancecompanies, Medicare and Medicaid.
Program Long-Term Success:
Over the past 55 years, The Myasthenia Gravis Treatment & Advocacy Center,has cared for thousands of people with myasthenia gravis. People have traveled to the Center from as far north as Erie County, as far east as Blair County, and beyond the western and southern borders of Pennsylvania. The Center is one of the oldest and largest in the United States.
Now, as we look to the future, the Center is committed to not only continuing its delivery of quality medical care and support services, but also to become a national model in the care and advocacy of those with MG. The Center’s goal is to provide a Medical Home for those with MG—a place where the patient and the disorder are well-known; a place where there is continuity and coordination of care; a place of dignity and respect; and, a place of HOPE. MGA is dedicated to changing the health care system so that Myasthenia Gravis is more readily recognized, accepted and understood.
Program Short-Term Success:
Recently, MGA staff members had personal contact with 3,153 patients with myasthenia gravis (MG), their families, their caregivers, and their providers. Additionally, 9,026 homes received our newsletter. The following services and supports were offered to the community:
- Over 556 individuals with MG were provided direct services
- 40 new patients have been welcomed into the Treatment Center regardless of insurance benefits or financial status
- 45 Treatment Center service days were made available
- 296 follow-up appointments were scheduled
- 713 follow-up phone calls were personally made
- 171 insurance company issues were resolved
- 15 disability claims were supported
- 657 prescriptions were ordered
- 606 faxes were sent and received
- 397 mailings were sent in support of people with MG
- 43 referrals were made to patient assistant programs
- 17 medical records requests were filled
- 3 newsletters were published and delivered
- 116 people attended educational opportunities
Program Success Monitored by:
A critical component of ensuring that MGA is making a worthwhile impact is through documented patient health changes of people with the disorder. Private medical records are kept noting a patient’s health on arrival to the Treatment Center. As a patient complies with the neurologists recommendations, patients overall health and well-being improves. Monitoring through medical documentation and self-reporting are the means by which the data is collected. Additionally, the organization tracks the number of advocacy interventions by staff members and whether or not they are resolved. These interventions occur primarily with coordinating care with other professionals and assisting with resolving insurance and social security issues.
Program Success Examples:
A patient shared the following, “I was diagnosed with Myasthenia Gravis in January of 2005 when I was 38 years old. At the time I was pretty active. After I was diagnosed, I continued to live pretty much the same life for the better part of a year. Then I started to notice that after a day’s work I couldn’t use my arms and legs well enough to exercise. When I came to MGA, I found the staff to be friendly and knowledgeable. They started me on plasmapheresis treatments and I now can actually drive myself to the appointments. I was turned down for Social Security disability insurance, but thanks to MGA’s advocates, I am now receiving disability compensation. My goal is to get back to work and with the help from the MGA I feel it is possible. It is nice to know that the neurologists and staff specialize in Myasthenia Gravis, so you can get the best and latest treatments available.”
Program:
The Myasthenia Gravis Education and Outreach Program
- Budget:
-
$75,000
- Category:
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Diseases, Disorders & Medical Disciplines
- Population Served:
-
Program Description:
In an attempt to generate a greater awareness about MG and minimize any stigmatization, the Myasthenia Gravis Treatment & Advocacy Center has various informational and educational resources for patients and their families, health care professionals, and the general public. The Center is especially committed to educating people who work within the health care industry so that those with MG are diagnosed faster and more accurately; that hospitals can provide a higher quality of care including timely dispensation of medications and appropriate administration of anesthesia to MG patients; and, that a greater number of providers are capable of effectively diagnosing and treating MG.
Program Long-Term Success:
Because the Myasthenia Gravis Association of Western Pennsylvania has built a respected reputation among professionals, doctors and hospitals from around the country look to the organization for up to date and accurate information about MG. At some point the organizations education staff looks forward to becoming a center for clinical research.
It is not unusual for MGA staff members to receive an email requesting additional information about the disorder from people anywhere in the world. Contacts requesting to be educated come, not only from Western Pennsylvania and surrounding areas, but from Mexico, Australia, India and other distant countries. Due to the accessibility of the organization’s website at
www.mgawpa.org, people desperate to become better educated about this lower incident disorder are thrilled to find a plethora of information. People are even more delighted to find a knowledgeable social worker available to answer general questions about myasthenia.
Program Short-Term Success:
The Myasthenia Gravis Association of Western Pennsylvania along with Allegheny General Hospital, The Multiple Sclerosis Service Society and the Parkinson’s Foundation of Western Pennsylvania recently collaborated on an outstanding conference geared toward patients. The conference was called, “Living with Neuromuscular Disorders”. The program was well attended and received excellent responses from the participants. In light of its success, the collaborative efforts are being extended to producing a conference geared toward the medical community. Education leads to early intervention. In turn, early intervention leads to a healthier community.
Patients with myasthenia gravis have also been encouraged through a newly established monthly support group. Chronic disorders tend to isolate individuals. Connecting individuals who empathize with one another has proved to be a beneficial endeavor.
Program Success Monitored by:
A survey system is in place to receive feedback from educational and outreach participants. Program evaluations are carefully scrutinized and guide the organization in validating or redirecting the Education and Outreach efforts.
Program Success Examples:
The Myasthenia Gravis Association of Western Pennsylvania’s Education and Community Outreach Program has had a profound impact on my life and lives of my friends affected by myasthenia gravis. MGA’s monthly support groups and social activities have allowed me to connect with other people living with myasthenia gravis, receive emotional and social support from them, and to know that I am not alone in what I am going through every day as I live with this chronic illness. MGA’s community education outreach efforts, such as their involvement in the recent Living with Neuromuscular Disorders Conference, help to raise awareness and understanding of myasthenia gravis within the community. By raising awareness of myasthenia gravis and educating the public and the medical community about this neuromuscular disorder, MGA continues to strive to spread awareness of the services they provide, and helps increase the community’s understanding of myasthenia gravis.