Highlight of this Year's National Convention

Each year, MSAA participates in two major national medical conferences. Held this spring were the annual meetings of the American Academy of Neurology (AAN) in Honolulu, Hawaii, and the Consortium of Multiple Sclerosis Centers (CMSC) in San Diego, California. These meetings are important to MSAA’s mission of easing the day-to-day challenges of individuals with MS and their families.

MSAA staffs a booth in the exhibition area of these conferences, with MSAA literature and details about MSAA programs. Medical professionals and representatives from national organizations and pharmaceutical companies stop by to exchange information and share ideas about programs and goals.

MSAA staff attends conference seminars to learn about the latest information in MS research and treatment from the top MS experts in the world. A few highlights of this year’s AAN conference included:

• Alemtuzumab (Campath®) is a monoclonal antibody that may have the ability to suppress disease activity and relapse rate. The makers of Campath have recently begun a three-year, phase II study to observe its effects on early, aggressive relapsing-remitting MS (RRMS). If interested in participating, please contact Campath’s MS patient referral line at (888) 410-1770. (Please refer to p.31 of the spring 2003 issue of The Motivator for more information.)
• Minocycline is an oral antibiotic that was well tolerated and may have the potential to reduce disease activity as shown on MRI scans.
• Simvastatin (Zocor®) is a cholesterol- lowering statin shown to be well- tolerated, and may hold the potential for positive immunomodulating and neuroprotective actions. Preliminary uncontrolled MRI results in MS patients are encouraging. (Please refer to p.30 of our spring 2003 issue of The Motivator for more information)
• Daclizumab (Zenapax®) is a monoclonal antibody that caused a dramatic reduction in lesions as observed on the MRI with participants who had RRMS and secondary-progressive MS (SPMS).
• Results of symptom management trials included the safety of donepezil hydrochloride (Aricept®), an oral Alzheimer’s medication which modestly improved cognitive function; improvements in fatigue with the drug modafinil (Provigil®; please refer to p.30 of our summer 2002 issue of The Motivator for more information); and improvements in walking speed and leg strength (but not fatigue) with 4-aminopyridine (4-AP).

As always, much information was given regarding the ongoing studies with the approved treatments for MS (Avonex®, Betaseron®, Copaxone®, Rebif® and Novantrone® — ABCR&N). For instance, a small study found that Copaxone did not cause an increase in birth defects or miscarriages with individuals who were pregnant while using Copaxone. This should help reduce worry for anyone who unexpectedly becomes pregnant while taking Copaxone.

Other ABCR&N information included: updates on neutralizing antibodies and high-dose versus low-dose interferons – with Rebif-treated patients continuing to fare better after one year than individuals taking the lower-dosed Avonex; FDA approval for Betaseron to be used for individuals with relapsing forms of MS, even if they have SPMS; FDA approval for Avonex to be given to individuals with a clinically isolated (MS-like) syndrome without a confirmed MS diagnosis; and Novantrone appearing to have some benefit in primary-progressive MS (PPMS).

Other topics included: the positive effects of yoga and exercise on MS, where a study found that yoga improved fatigue and exercise increased aerobic capacity; and childhood (or pediatric) MS, which was a rarity 20 years ago, and is better recognized or more common today.

Dr. Jack Burks, MSAA’s chief medical officer and former AAN Board of Directors member, as well as one of the founders of the CMSC, comments that, “The explosion of new research of treatments is an indication of the vast expertise and resources focused on MS today.”

At the CMSC conference, much emphasis was given to the ongoing need for care of individuals with MS. This includes the immunomodulating therapies (ABCR & N), symptom management, and rehabilitation strategies. Joining the CMSC are the International Organization of Multiple Sclerosis Nurses (IOMSN) and the Latin America Committee for Treatment and Research in Multiple Sclerosis (LACTRIMS), so much information is also directed toward MS nursing care as well as to medical professionals from Latin America.

Among the many exciting and educational topics was information about The Huega MS Center in Colorado. This program takes a team approach to every individual who attends. A core staff along with several contributing professionals work together to develop a plan that addresses all aspects of an individual’s wellbeing – from neurological and medical issues, to nutrition, exercise, psychology, and occupational therapy – to name a few. After the attendee returns home, his or her local neurologist becomes involved with the plan, and volunteers call to follow-up and keep the program ongoing.

The CMSC focuses on the total person and stresses the importance of good communication with one’s doctor. Having a nurse practitioner assess an individual every three months, and communicating information to the neurologist who should assess the same patient every six months, can help ensure that the individual is receiving proper care, and that problems are resolved before they escalate into bigger issues.

This overview of the AAN and CMSC annual conferences provides only a small sampling of the many topics addressed during these multiple-day events. Please look to future issues of The Motivator for more information about new research, treatment strategies, and programs.