June was another busy month of writing for MultipleSclerosis.net, especially with my coverage of the Consortium for MS Centers annual meeting, held the last week of May. Here’s a peek and links of what I contributed last month. I hope you see something you want to read more about and even share with others to read. best, Laura
More than once I’ve wondered to myself and questioned others about the aging population of people withMS and what adjustments to our care might need to be made. The current state of medical treatments make it possible to live longer, and although that is a very good thing it also complicates our medical care.
How well do we understand progressive MS today? was the closing keynote address for the Consortium of MS Centers annual meeting, given by Alan Thompson, MD. He is a leading authority on progressive multiple sclerosis and Dr. Thompson is on the faculty of Brain Sciences, University College London, and serves in high level positions of the boards of MS international Federation, the International Progressive MS Alliances, and the National Multiple Sclerosis Association. He serves as the editor-in –chief for Multiple Sclerosis Journal
By Laura Kolaczkowski—June 3, 2015
Everyone gets those reminder telephone calls before their appointment about what time to get there, to bring the most recent insurance card and copay, and of course the list of drugs you are taking. Those are standards for every medical appointment, but what else can you do to make the most of your time? No matter how much or how little time you have with your neurologist, once the exam door is closed you want to make the most of it.
The newest multiple sclerosis drug approved in 2014 was alemtuzumab, trade name Lemtrada. One of the early morning (7:00 AM) presentations I attended at the recent Consortium for MS Centers annual meeting,Independently Supported Symposium (#7): Management of Alemtuzumab Infusions for Patients with Relapsing MS, was sponsored by the drug’s manufacturer, Genzyme, and was for people who work in clinics that administer or plan to give Lemtrada. The presentation was full of facts and an opportunity for me to learn more about the minute details of Lemtrada, since it is still in its infancy of use here in the US.
The talk was given by Christine Cain, MSN, Lori Mayer, MD, and Colleen Miller, MSN, and my article here is a consolidation of their combined comments. The details of the drug, its administration and complications are all factors to be considered by a person before consenting to Lemtrada therapy, and that is the focus of my article here.
I can’t agree more with Cathy Chester and her enthusiasm about the recent meetings in Indianapolis for the Consortium for MS Centers annual meeting. There were over 2,000 health allied professionals in attendance, all there to learn more about improving care for people with Multiple Sclerosis.
Unlike the annual Academy of American Neurology meetings where there seem to always be headline grabbing presentations announcing the latest treatments or breakthroughs in the labs, this meet is much more blue collar. The people there rolled up their sleeves and got down to the nitty gritty of MS.
Comorbidity seems to be the word of the day lately in all types of multiple sclerosis discussions. Medical conversation, reviews and scientific manuscripts, link many other chronic conditions such as obesity,depression, rheumatoid arthritis and type 2 diabetes to multiple sclerosis as a comorbid companion.
Comorbidity – the word sits with me like a newly introduced phrase that is popular at the moment because I keep hearing and reading it everywhere, and when I went looking for the root meaning of the word I stumbled upon this handy little tool from Google books which charts the use of words in books over a period of time. Not surprising to me, the word comorbidity does not even appear in a book until the 1980’s, but has taken off in use since that time.1
In almost every area of endeavor there are those people who do work that rises above the rest, making them stars even among others who also accomplish great things. There are a lot of people who write blogs aboutMS and there are a number of them who shine above the rest with really stellar work. But then there are the superstars – those few writers who can be trusted to always get the information correct and add their own touch, making their blog not only enjoyable to read but also crammed full of information. Gavin Giovanonni, MD., is one of those superstars of the MS blogosphere.
Anthony Feinstein, MD, PhD. gave the lecture – MS, Cannabis and Cognitive Dysfunction: Insights from Brain Imaging, to a standing-room only crowd at the opening presentation for the Consortium for MS Centers annual meeting in Indianapolis. He is in the Department of Psychiatry at the University of Toronto, and his research into this topic was funded by the National MS Society of Canada.
Dr. Feinstein began by tracing the roots of the drug back to the 9th century and took his audience through a timeline of cannabis use and its forms. One form was in the 19th century here in the US when it was combined with morphine and capsicum to be used as a pain killer. Well into the 20th century, cannabis was recognized and used by the medical field for its analgesic properties. “Cannabis has a long powerful lineage of medicinal use,” Dr. Feinstein said.
Do you participate in NARCOMS surveys? That would be the North American Committee on Multiple Sclerosis and their patient data surveys that are generated twice a year and is a longitudinal study tracking our MS and various symptoms and progression. In addition to their regular surveys, they will on occasion conduct special targeted surveys and such was the case with a survey regarding attitudes toward marijuanause among people with MS. Stacey Cofield, PhD, is the lead investigator for this project and I had the opportunity to talk with her about the survey results at the Consortium for MS Centers annual meeting, held in Indianapolis.
The survey was created as a response to NARCOMS participants’ suggestion that they include questions about medical marijuana use in their surveys. The information entered through the NARCOMS registry is linked to our personal records, and to address the privacy concerns about gathering information on a drug that is still illegal in many parts of the US, they asked the questions via SurveyMonkey, an online survey tool. I am a member of NARCOMS and did complete this survey in 2014.
Practical Strategies for Improving Outcomes in Diverse MS Populations was the Symposium that started the second day of the annual Consortium for MS Centers meeting in Indianapolis. This is a topic of special interest to many people because of the differences in how people react to treatment, depending on their ethnic and genetic background. It was a panel presentation and these are the topics of each presenter and my summation of their text and comments.
I’ve done it and the odds are you have, too – many of us have good intentions and when we get our driver’s license we check the box that holds the option to be an organ donor. We want to help and know there are so many people waiting for organ donations to heal their ill and broken bodies.
According to the DonateLife website –
Currently, nearly 124,000 men, women and children are awaiting organ transplants in the United States. For specific numbers visit unos.org.
- Approximately 77,633 Multicultural Patients*
- Approximately 2,146 Pediatric Patients*
- 29,532 Organ Transplants Performed in 2014
- 14,414 Organ Donors in 2014
- More than 47,000 corneas were transplanted in 2013
- More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising.
Do you know about MotherToBaby or the Assistance Fund? Don’t feel alone if you don’t, because I didn’t either until recently when I attended the annual meeting of the Consortium for MS Centers, a four day event jammed full of seminars, classes, lectures and much more. There was an exhibit area, which was the showcase presentation point for all of the MS pharmaceutical companies, health care delivery businesses and more. The familiar non-profit advocacy groups were there as well, including Accelerated Cure Project (iConquerMS™), Multiple Sclerosis Association of America, CanDo MS, MS Foundation and the National Multiple Sclerosis Society. These groups, along with a few others make up the MS Coalition, organized to leverage limited resources and collaborate with each other.
Among these better known MS organizations were a few lesser known non-profit organizations that I was not familiar with and am especially glad I had the opportunity to learn more about two of them that are associated with MS drugs and can share their information with you.