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The USA National MS Society reported last week that physicians in Boston have reported two cases of melanoma (skin cancer) that developed in women in their practice who were administered Tysabri® (natalizumab) to treat their multiple sclerosis.
“The melanomas developed early in the course of treatment, but it cannot be confirmed from these case reports that Tysabri caused them.”
The Society says that the authors advise against treating individuals with Tysabri when there is a personal or family history of melanoma or in patients with atypical moles or ocular nevus (spot at the back of the eye).
“These reports raise concern and they underscore the importance of carefully tracking patients on powerful medications like Tysabri,” said Dr. John R. Richert, executive vice president of research and clinical programs at the National MS Society. “This drug is relatively new to the market, and as experience grows we are bound to learn more about its benefits as well as possible adverse events,” Dr. Richert added.
Read more at: http://www.nationalmssociety.org/site/PageServer?pagename=HOM_RES_research_2008feb7
Or source full text of research report at: http://highwire.stanford.edu/cgi/medline/pmid;18256405
Recent research advises us that impairment to thinking & memory is a common symptom for people with MS.
This study set out to show that improvements can be made to the everyday thinking and memory of people with MS-related cognitive impairment.
An occupational therapist trained 20 participants to use (PDAs or hand-held electronic diaries). They took assessments of performance at the outset, at the end of training, and then 8 weeks after training had ended.
They advise that those who participated in the study demonstrated the ability to learn how to use basic PDA functions and retained this learning for at least 8 weeks. Also, they say, their cognitive performance increased significantly with PDA use, and the gain was maintained at a follow-up after 8 weeks.
Read more at: http://highwire.stanford.edu/cgi/medline/pmid;18254427
The USA National MS Society reports that researchers have shown that one course of the IV drug rituximab (Rituxan®) has reduced disease activity and relapses for 48 weeks in people with relapsing-remitting MS.
Rituximab depletes immune B cells, which may play a role in the immune attack on brain and spinal cord tissues.
Two infusions of rituximab were administered two weeks apart to 69 people, and an inactive placebo to 35. The primary goal of the study was to determine the drug’s effect on “enhancing” brain lesions at various intervals following infusion.
They found that the number of active lesions at 24 weeks was reduced by 91% in the group taking rituximab. 58% fewer people in the treatment group had relapses.
Researchers say that these findings not only herald the potential of a new therapeutic strategy for MS, but they also may shed light on the mechanisms leading to the disease.
“Rituximab treatment showed benefit as early as four weeks. This suggests that the clinical benefit of depleting B cells may not be as it has been believed to be from curbing their production of immune system antibodies.
“For decades, immune T cells have been thought to be the main culprits in MS, and the rituximab study raises the possibility that interactions between B cells and T cells may be key to the destructive action of the immune system in MS.
Rituximab is approved for use internationally with certain types of lymphoma and one form of arthritis. The drug has been associated with severe adverse effects, but these have not occurred in the MS studies so far.
Read more at: http://www.nationalmssociety.org/site/PageServer?pagename=HOM_RES_research_2008feb15_2
Or source full text of research report at: http://content.nejm.org/cgi/content/abstract/358/7/676
New insurance guidelines were released by the Human Rights Commission (HRC) in December last year.
These are intended to cut out discrimination and provide peace of mind and a safety net for people who have experienced ill health or some other disabling situation and who seek insurance for mortgage, travel, income protection, etc.
In an industry often viewed as ‘mysterious’, the new guidelines attempt to deal with the need for greater transparency and communication – to improve the public’s understanding of how insurance works. This is particularly important when a higher premium is charged, or cover is restricted or not available. The public has a right to know why they’ve been charged a higher premium or been offered limited cover, and when a review can be considered.
Central to the new guidelines is that nobody is unlawfully denied insurance in New Zealand, and the Human Rights Commission has a complaints process set up for people to fall back on if they’re treated unfairly.
There is a complaints process. The Human Rights Commission offers a free, confidential and impartial process for handling any complaints of unlawful discrimination, including those to so with insurance. This process is kept as informal as possible – complaints don’t even have to be in writing (although if the issue is complex or long running a written report may be necessary). You do not require legal representation when making a complaint, and Commission representatives facilitate mediation meetings and provide parties with all the information and advice they need. The Human Rights Commission’s Infoline 0800 4 YOUR RIGHTS (0800 496 877) will accept enquiries or complaints by phone or you can email infoline@hrc.co.nz
Those with MS who are wheelchair users will identify with this website. A disabled student is out to shame operators of Auckland venues with wheelchair access.
Red Nicholson will be offending establishments on his new website www.walkingisoverrated.com . The 21-year-old says that many minority groups have websites where people can talk about their lives.
“There doesn't seem to be anything like that in New Zealand for disabled people. What better person to decide if somewhere is wheelchair accessible than someone in a wheelchair?”
Mr Nicholson, who has cerebral palsy and uses a power wheelchair, says going out with friends can be a challenge. He is often frustrated by the lack of information about venues that are truly wheelchair accessible.
His website features news and views and has had hundreds of hits since its launch back in October. He wants it to be a collaborative effort, with people contributing reviews and chatting about life with a disability. He also hopes it will be used by people with disabled friends and family when planning social events, "It will enable people all over the country to talk, not only about problems but also about positive things, little achievements not being picked up by mainstream media,” he says.
The ‘Moving Forward’ films from the US National MS Society National Conference in October 2007 are now available to view on YouTube at http://www.msif.org/en/news/ms_news/us_the_moving.html
Five people were shortlisted from a NMSS competition for film script ideas and their films debuted at the first ‘Moving Forward’ Film Festival. The ‘Moving Forward’ films include docu-diaries, interviews and animations and describe very individual, creative experiences and interpretations of MS.
MS Northern Ireland reports that recent changes to disability legislation there make improvements in the protection given to people with disabilities and widen the scope of existing law, such as employment law.
In particular, this means good news for people with cancer, multiple sclerosis or HIV who are now covered from the point of their diagnosis, rather than from the point when the condition has some adverse effect on their ability to carry out normal day-to-day activities.
The report says that people so affected in Northern Ireland should be aware that they now have additional rights, and employers also need to be aware of the changes.
“For example, people in this situation will be entitled to flexibility at work to enable them to meet the demands of dealing with their illness. They may have to make frequent trips to hospital and undergo treatment or tests which require recovery time and may need time off work or a change in working patterns.”