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On 10 October 2007 the MS International Federation (MSIF) and the Czech MS Society (CzMSS), in collaboration with the European Multiple Sclerosis Platform (EMSP), held Prague 07 - Living with MS: Today and Tomorrow, a free one-day event at the Prague Congress Centre, Prague.
The event was the first of its kind to be held in the Czech Republic. Leading international MS specialists presented the current and future developments of six key topics, introduced by people with MS. Topics included how MS is diagnosed, how information is provided, options for treatment, therapy, management and daily living.
The event, for 600 people affected by MS, health professionals and MS society staff and volunteers, preceded the 23rd Congress of the European Committee for Treatment and Research of Multiple Sclerosis (ECTRIMS) and the 12th Conference of Rehabilitation in Multiple Sclerosis (RIMS) which took place 11-14 October 2007. Read more at: http://www.msif.org/en/life_with_ms/living_with_ms_day/index.html
The 23rd Congress of the European Committee for Treatment and Research in Multiple Sclerosis was held last month in Prague, Czech Republic.
A number of developments were reported from several studies, the most prominent of which were:
Short-term exposure to the potent immunosuppressive effects of cyclophosphamide can prevent brain atrophy in people with relapsing-remitting multiple sclerosis (RRMS) who are not responding to interferon beta (IFNbeta) or glatiramer acetate treatment.
Immune ablation and autologous stem cell transplantation completely abrogate relapses and MRI events related to ongoing inflammation for up to 5 years.
You can read about these and others in our roundup of recent Research News highlights at: http://www.msnz.org.nz/research/research_news.html.
US researchers suggest an eye exam that takes five minutes could become an inexpensive and effective way to gauge and track MS. (see related story at: www.mznz.org.nz /research/research_news.html).
The study, published in Neurology, used a procedure called optical coherence tomography to scan optic nerves as a complement to magnetic resonance imaging to track the effectiveness of treatments for MS.
The Johns Hopkins University researchers used optical coherence tomography to test 40 MS patients to scan the layers of nerve fibers of the retina. The retinal nerve fiber layer is the one part of the brain where nerve cells are not covered with the fat and protein sheathing called myelin, making this assessment specific for nerve damage as opposed to brain MRI changes, which reflect an array of different types of tissue processes in the brain.
The researchers found a correlation coefficient of 0.46 of the study participants, but for patients with relapsing remitting MS, correlation coefficient jumped to 0.69, suggesting an even stronger association between the retinal measurement and brain atrophy.
"This is an encouraging result," lead author Dr. Peter Calabresi said in a statement. "With optical coherence tomography we can see exactly how healthy these nerves are, potentially in advance of other symptoms."
This simple eye scan opens a window to MS.
In addition, says Calabresi, OCT scans take roughly one-tenth as long and cost one-tenth as much as the MRI, which means they are faster and cheaper to use in studies that track the effectiveness of new treatments for MS.
General practitioners in Australia will be able to refer patients for MRI scans of their knees and suspected MS from the first day of 2008.
The Australian Federal Government has granted GPs the power to directly refer people for MRI scans to fast track knee and MS detection, which make up 20 per cent of MRI services.
But the Australian Medical Association say the decision doesn't go far enough and more conditions should have been included.
A common acne medication that has been available for over 30 years has the potential to delay the progress of MS and if proven effective, will offer an inexpensive option for the treatment of early MS, says the MS Society of Canada.
Clinical researchers in Calgary and 13 other Canadian centres will be taking an in-depth look at an oral therapy known as minocycline after initial studies have shown promising results. A new $4 million multi-centre clinical trial involving 200 participants from across Canada is being funded through the MS Society's related MS Scientific Research Foundation.
"The benefits of minocycline are straight forward: it's relatively cheap, has few side effects and can be taken in pill format," says Dr. Luanne Metz, principal investigator for the study and a professor of clinical neurosciences at the University of Calgary Faculty of Medicine. "The aim of our research is to see if this common drug can reduce the occurrence of further disease activity in people who have experienced an initial attack of MS symptoms and who are at high risk of progressing to definite MS. Without treatment, two thirds of people facing this circumstance are expected to be diagnosed with MS within 6 months. We believe minocycline can reduce this number.
"In MS, myelin, which is the protective coating of the nerve fibres of the brain and spinal cord, becomes inflamed. This inflammation can be seen as characteristic lesions by magnetic resonance imaging (MRI). Previous clinical tests of minocycline have shown an 84 per cent reduction of MS lesion activity on MRI.
"There is obvious benefit in delaying the rate of disease progression in MS, from improved quality of life to reduced healthcare expenses," says Dr. William McIlroy, national medical advisor for the MS Society of Canada. "The breadth of the study, the reputation of the researchers involved and the early clinical data supports the view that there is considerable promise for minocycline. We would not be involved if this were not the case."
Minocycline works by inhibiting the activities of an enzyme and immune cells that are keys to initiating MS attacks. It has been used in acne treatment for its anti-bacterial effects but studies have shown its anti-inflammatory properties could be important factors in slowing down MS. These insights were discovered through pioneering research funded by the MS Society of Canada and led by Dr. V. Wee Yong at the University of Calgary (U of C). Drs. Metz and Yong lead the MS program at the Hotchkiss Brain Institute at U of C where many of the early studies on minocycline took place.
In comparing minocycline to current therapies, the cost savings would be substantial. In generic form, minocycline is available for as low as $800 per year. Current MS therapies can cost between $18,000 and $40,000 per year. Researchers note that minocycline would not necessarily replace current therapies, but might delay the timeframe in which they would be required.
The study will be randomized and double-blind by design. Investigators will compare 100 mg of oral minocycline twice daily to placebo over a period of two years.
This exciting news of the launch of a Canada-wide clinical trial was however clouded by a published report suggesting the drug was harmful in patients with ALS, a nerve disease also known as Lou Gehrig’s disease. Although ALS impacts a different part of the central nervous system than MS, the investigators who did that trial caution that their results may have implications for other neurological diseases including MS.
Dr. Metz and colleagues are aware of the ALS results. They believe that significant differences between ALS and MS, the lower dosage to be used, the ability to monitor MS disease worsening with MRI, and other factors will minimize risks to trial participants. However, they point out that there are risks of any untested treatment, and therefore caution against the off-label use of minocycline in MS or in suspected MS outside of the controlled setting of their clinical trial.
Drug maker Bayer AG said recently that it will take a charge of €152 million (NZD288.63 million) from a decision to abandon plans to market a bigger dose of its MS treatment Betaferon.
The company said that Bayer Schering Pharma AG, a unit set up after its nearly €16.9 billion acquisition of Schering AG in 2006, found in tests that a 500-microgram dose of Betaferon was no more effective in preventing relapses by patients who suffer from MS than the 250-microgram dose of Betaferon or that of Copaxone, which is produced by Teva Pharmaceutical Industries Ltd.
Bayer said that because it won't seek permission from regulators to sell the higher dosage of Betaferon, also known as Betaseron, it would depreciate the costs of the study in the third quarter.
Betaferon is a major drug for Bayer, accounting for some €500 million (NZD948.58 million) in sales in the first six months of 2007. The company expects those sales to rise between 7 and 9 percent through 2008.
Nicoletta Mantovani, the widow of the Italian opera singer Luciano Pavarotti who died in September, told viewers of Italian television recently that she has been suffering from MS for years.
I found out that I had the disease more than 13 years ago, around six months after my relationship with Pavarotti started, said the 37 year old Mantovani in an interview, confirming the media speculations about her health.
For me it was most important for Pavarotti to accept the illness as a part of me, and part of my character, said Nicoletta.
The Italian weekly Chi (Who) reported that Mantovani travelled to New York once a month for treatment at the research centre for that disease there.
The opera singer and Nicoletta Mantovani married in 2003, and have a daughter called Alice. Pavarotti died on September 6, aged 71 in his home town, Modena.
Pavarotti divorced his wife of 35 years to marry his assistant. The daughters from his first marriage are now contesting his will.
Ms Mantovani, is reported to be in a dispute over his estimated fortune of generous provisions for her. Ms Mantovani is said to be receiving treatment at a clinic in New York, where she has inherited Pavarotti’s apartment.
The news came a day after an Italian prosecutor opened an inquiry into whether Pavarotti “knew what he was doing” when he signed a will at the end of July leaving his American assets to Ms Mantovani. The singer signed the document at his villa in Pesaro, making her the sole administrator and beneficiary of a trust fund controlling all his assets in the United States, including his art collection as well as the New York property.
Pavarotti is known to have drawn up three wills: the American one, which is handwritten, last December, and two further documents in Italy in June and July this year.
Chi said that the illness showed the real reason Ms Mantovani had travelled to New York a few days after Pavarotti’s funeral at Modena, his home town. It said that she was being treated at the Multiple Sclerosis Research Center of New York.
The handwritten will dated December 2006 was less generous to Ms Mantovani, leaving her his properties in Modena and Pesaro and adding: “I make my heirs my daughters Lorenza, Cristina, Giuliana and Alice, to whom I leave all my other goods, shared evenly among them.”
Lawyers for Ms Mantovani argue that it was superseded by the June will, leaving half the estate to his four daughters, 25 per cent to his widow and a further 25 per cent to be divided as the executors decided, and by the July codicil leaving all his American assets to Ms Mantovani.
The MS International Federation is delighted to announce last week that, further to their objective of stimulating MS research, they are awarding a record five McDonald Fellowships to allow five promising young MS researchers from Argentina, Brazil, Romania, Spain and Thailand to spend two years working in some of the world’s leading MS research centres. Read more at: http://www.msif.org/en/research/msif_research_awards/2007_mcdonald.html
Visit www.carers.net.nz to read the full findings of Carers NZ's priorities survey, which was completed by more than 620 family carers during the recent Carers' Strategy consultation period.
NZ carers were asked to choose five concerns or priorities from a list of 16 common carer concerns.
Carers' own wellness, and access to good services for their family member, were top equal priorities for carers in the survey.
An important finding was the high rate of injury experienced by family carers in their role (42% of respondents).
Many of these carers do not lodge a claim with ACC for their injury, or pursue treatment.
In a recent speech, Revenue Minister Peter Dunne signalled that two discussion papers are about to be released which look making it easier for people to donate their time and money for the benefit of others.
The first paper, due for release early November, looks at a number of possible solutions to the long-standing problem of taxing honoraria and volunteer reimbursements. A URL link to this paper will be distributed as soon as it is made known.
“Following the release of last year's discussion document ‘Tax incentives for giving to charities and other non-profit organizations’, significant concerns were raised about the tax treatment of reimbursements and honoraria paid to volunteers,” said Mr Dunne.
As the law now stands, volunteers and charitable organisations are often unclear about their tax obligations relating to reimbursement payments for volunteers. Ultimately, this adds to the compliance costs faced by non-profit organisations and can act as a deterrent to people offering their time to these organisations.
The paper will seek feedback on a number of suggestions for clarifying the law and new options for the tax treatment of volunteer reimbursements and honoraria.
“The over-arching consideration for the government is to make it easier for volunteers and more than 90,000 organisations that make up the charitable sector to comply with their tax obligations so they can get on with their primary functions” he said.
The second set of proposals for further developing a more generous culture of giving are contained in a discussion document due for release in mid-November.
“This second paper looks at how we might introduce a payroll-giving scheme to New Zealand,” said Mr Dunne. “Payroll-giving schemes have been well-received in a number of other countries, including Australia and the United Kingdom, for their simplicity, convenience and effectiveness in facilitating charitable giving.
This discussion document will put forward a number of suggestions for implementing an appropriate payroll scheme that would balance the needs of New Zealand employers with the expectations of employees wishing to participate in this type of scheme.
IRD has released the issues paper The tax treatment of honoraria and reimbursements paid to volunteers. The paper invites you to submit your feedback on ways of dealing current uncertainties in the tax law regarding reimbursements of volunteers’ expenses and compliance costs for volunteers and non-profit organisations. Submissions close on the 14 December 2007.
For more information see the government's media statement and the issues paper, "The tax treatment of honoraria and reimbursements paid to volunteers" at: http://www.taxpolicy.ird.govt.nz
Hon. Ruth Dyson has been given the Community and Voluntary Sector portfolio in the Cabinet changes just announced by the Prime Minister. Ms Dyson’s other responsibilities are Minister for Social Development and Employment, Senior Citizens and Disability Issues. This change brings responsibility for the Community and Voluntary Sector into Cabinet and Ms Dyson is ranked 11th.
Enrolment has begun for two large-scale clinical trials testing the safety and effectiveness of the experimental oral drug BG00012 (dimethyl fumarate, Biogen Idec, Inc) in people with relapsing-remitting MS. These phase III studies are known as the DEFINE study and the CONFIRM study. The DEFINE study compares two different doses of BG00012 against inactive placebo, and is enrolling 1011 patients at 160 sites in North America, Europe and other parts of the world. The CONFIRM study compares two different doses of BG00012, or injections of glatiramer acetate (Copaxone®, Teva Pharmaceutical Industries), against inactive placebo. That study is enrolling 1232 patients at 175 sites in North America, Europe and other parts of the world. Both studies are being sponsored by Biogen Idec, Inc.