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We still have much to understand and address about the challenges faced by individuals with NF1 as they age. These span from the practical challenges of transitioning from pediatric to adult clinical care in young adulthood; to the clinical challenges of understanding how the clinical manifestations NF1 itself might progress as a person ages. This is an area of NF1 that has not been heavily studied and it is therefore good news that Dr. John Mulvihill is hosting a Workshop on Aging in NF1, September 9-10, 2011 at the University of Oklahoma Health Sciences Center in Oklahoma City, OK. This is the first announcement of this meeting, which is intended for clinicans and scientists with a research interest in this area. Those interested in participating should contact Dr. Mulvihill at John-Mulvihill@ouhsc.edu or Shona Whitehead at Shona-Whitehead@ouhsc.edu. This meeting is funded in part by a United States Department of Defense contract #W81XWH-06-1-0465.

A report in today's New York Times highlights new changes in health law that could stymie cost reductions to ensure access to drugs such as Avastin for children living with orphan diseases - i.e. those conditions affecting fewer than 200,000 Americans (NF affects 100,000 Americans). The changes affect regulations introduced a couple of years ago that would ensure that new drugs be available at 30 to 50% reduced cost for very expensive drug regimes, or to persons with no or insufficient insurance; children's hospitals were beneficiaries of this since many orphan conditions are identified and first treated in childhood. The law changes may be well received by some pharmaceutical companies who were less supportive of losing revenue through the program; but the changes  have cause serious concerns among clinical care providers; many hospitals if they wish to provide drug regimes are left assuming the increased costs, as reported in this article.

This is the second in a series of articles outlining the agenda for the 2nd Annual NF Forum in Las Vegas from April 9-11.  The NF Forum is a patient and family medical symposium designed to educate individuals (of all ages) and their families about NF, management options, clinical trials, insurance concerns, social challenges and many other expressions of NF1 and NF2. 

Attaining health insurance and receiving the care promised to those who have health insurance are ongoing challenges facing many of those in the NF community.  Tackling and Understanding Health Insurance will address the concerns of those living with NF and their families.  The session aims to empower the NF community with the tools necessary to find available health insurance, or as the case may be, make certain the insurance policy holders have the coverage they will need if the unexpected occurs.  Topics will include:

• Genetic Information Nondiscrimination Act; discuss the pending health legislation, and what impact any likely or actual version of the legislation might have to the NF community.
• Understanding health insurance and your rights as a patient.
• Action Plan i.e what to do if you get denied for insurance and or how to present your case for insurance.
• Question and Answer period.

We welcome suggestions for further discussion, please feel free to share in the comment section below.  To learn more about the NF Forum please click here.

About the presenter:

Elaine C. Martinez
Case Manager, Colorectal CareLine
Patient Advocate Foundation

Elaine Martinez is a case manager with the Colorectal CareLine at the Patient Advocate Foundation. She is based at a district office in LasVegas, Nevada. Martinez serves as an active liaison between patients and their insurers, employers and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to their diagnosis of colorectal cancer. Her responsibilities include: exploring reimbursement levels for prescribed colorectal cancer treatments, researching available clinical trials for this patient population and facilitating enrollment into appropriate patient resource programs for both the uninsured and underinsured colorectal patients. She is also involved with the Lymphedema CareLine where she provides case management assistance to those patients diagnosed with Lymphedema and assists with education, access to care and navigating the reimbursement system. She brings over 27 years of Licensed Practical Nursing experience involved in neurology, obstetrics and gynecology, mental health, gerontology, medical auditing and dermatology. Her experience has always led her to be an advocate for her patients. In her previous position, she was the back office supervisor for a busy dermatology office that treated a large number of skin cancer patients. She was actively involved in obtaining prior authorizations for patient’s medications from insurance companies and initiating the appeals process when necessary.

Elaine graduated with her LPN from Buckeye School of Practical Nursing at Northwest State College in Archbold, Ohio. She also has a certificate in animal laboratory technology from the Institute of Laboratory Technology in Oxford, England. She is married with four children and resides in LasVegas, Nevada.