A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.
through your policy, or simply sifting through documents from your insurance
company, can be very tedious -- and even more so when you do not understand the
"language." Becoming familiar with your policy can help you
understand commonly used insurance terms and strengthen your proficiency when
communicating with insurance companies. Before you can begin advocating for the
health benefits that you are entitled to, you must have a copy of your
insurance policy. Ask your employer or insurance company to send you a Summary
Plan Description and all Benefit Plans provided by your employer. You should
know that upon written request, your employer (or the Plan Administrator) is
obligated under Federal Law to provide you with information regarding benefit
programs within 30 days. Know your policy: without it, you don't know the
Plenty of people have difficulty interpreting the terms of their policy. It is
not uncommon for our clients to seek our advice in making a claim or appeal to
their insurance company.
# 2: Communicating with insurance companies
Homes and Gardens (BHG) conducted a survey of over 1,000 women across the
country. They found many survey respondents to be intimidated simply by the
thought of contacting their insurers. 44% of these participants confessed they
lacked confidence in communicating effectively with insurance companies, and
76% said they desired to learn how to properly communicate with their insurer.
At Kantor & Kantor,
we understand how challenging and overwhelming the prospect of trying to get
answers from your insurance company can be. We advise that you try to stay off
the phone as much as possible! All communication should be in writing, in
traceable forms such as certified mail, fax or e-mail. If you can't prove it,
it never happened! Although it's not always possible, while you are on the
phone try to get the name, title, phone number and email address of everyone
you talk to. Speaking with different insurance representatives can become
confusing and overwhelming. Keep a journal of your conversations so that you
can refer back to them later.
# 3: Filing Appeals when coverage is denied
30 % of
the BHG survey participants reported that they have been billed for something
that they believed should have been covered. Sadly, many people who fall into
this category end up paying the insurance company without a fight. For
instance, 57% of participants said that they would not know how to appeal a
coverage denial, and 23% of participants said that they have actually ducked
the appeal process because it seemed too complicated. The appeal process is
complicated, but it is often worth the effort! Former Insurance Executive Lisa
Zamosky (author of Healthcare, Insurance, and You) said that more than half of
all appeals are decided in the insured's favor. Below are a few simple tips to
help make you more familiar and comfortable with the appeal process, in the
event that your health insurance claim is unfairly denied. Our hope is that
having this information readily available to consumers will make the appeal process
seem a little less complicated, and a little bit more approachable and
initiating the appeal process, request your claim file and policy from your
insurance carrier or employer. You will need to review your policy. Consider
what evidence you have to prove that this coverage is medically necessary, and
include this in your appeal packet. Remember that if you have an ERISA
(Employee Retirement Income Security Act) governed policy, once a decision is
made on your final appeal, your file is closed. Any information you leave out
may never be heard or considered by a court!
policy is a contract," says Cofounder of Health Advocate Martin Rosen.
"The more you know, the better case you can make." If you need help
interpreting the language of your policy, do not hesitate to contact an expert.
Kantor & Kantor
offers no-cost consultations, and can offer support when appealing a health,
disability, or long term care insurance denial.
To Write An Appeal Letter
appeal letter should read like a cover letter to your insurance company. Refer
to the evidence and documents enclosed in your appeal packet, and indicate why
this information should change their mind. Although appeal letters vary in
style, the format of your letter should include the following: First, simply
state that you are appealing the decision. Next, explain why you disagree with
the decision. Finally, provide support to your claim. Take this opportunity to
explain the history of your health condition and treatment, including side
effects of any medications, and the full impact the illness has had on your
life. In your letter, consider including:
any prior letters or documents
out the inconsistencies in your insurer's decision
out the irregularities in your insurer's decision
out the omissions in your insurer's decision
any new documents
Gather and Include Evidence
copies of all medical records. Remember to keep copies of all out-of-pocket
expenses for future reimbursement.
Written Support From Your Doctor, Family, and Friends, and Co-Workers
from providers and family members can be a powerful way to display how your
illness has impacted your life. Be as thorough as possible so that you can
transmit the full picture to the insurance company.
Understand That A Denial Is Not The Final Word
denial by your insurance company is not the final word. With a little advocacy,
research, and determination, you will have the tools to fight for the health
benefits to which you are entitled. For some, it might be possible to overturn
a denial without legal assistance. If a case becomes too complex to manage on
your own, you may want to consider seeking assistance from a reputable
Kantor & Kantor is one
of the most experienced and highly respected law firms dealing with the
prosecution of claims against insurance companies. We represent clients whose
insurance companies have failed or refused to pay claims arising out of
Disability, Health, Life, Long Term Care and other liability insurance claims.
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Canadians are proud of being recognized the world over for certain things -- everything from hockey to Tim Hortons, maple syrup to "eh?"
But some Canadian facts are not so wonderful. One of those is the prevalence of multiple sclerosis. Canadians have one of the highest rates of multiple sclerosis in the world.
According the the MS Society of Canada, MS is the most common neurological disease affecting young adults in Canada. Every day, three more people in Canada are diagnosed with MS and women are more than three times as likely to develop MS as men.
May is MS Awareness Month in Canada and in addition to educational programs and media blitzes, canvassing and local fundraising endeavours are helping to pay for valuable research.
Multiple sclerosis' most dangerous dynamic is that the disease is complex and mysterious in its causes. Once it hits, its effects are varied in both kind and severity. And there is no cure.
Some people are able to live with the impact of MS for many years, others suffer greatly and lose a great deal of their bodily functions and in fact the resulting impact on organs can be fatal.
While it is most often diagnosed in young adults, aged 15 to 40, it affects children, some as young as two years old.
According to the society, MS can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis.
Researchers are making progress, but it's an arduously slow progress.
*above photograph: (at top) A T lymphocyte is activated after contact with a phagocytic cell. Each picture shows a different time-point in a video recording of the interaction between the two cells. (bottom) An autoreactive T lymphocyte, here in contact with a microglia cell, is activated deep within inflamed nervous tissue.
Department of Neuroimmunology and the Institute for Multiple Sclerosis Research (IMSF) scientists at the University Medical Center Göttingen found a way to make it possible to see exactly where self-destructive brain inflammation is produced.
This incredible technique can allow researchers to track formerly unexplained occurrences in those with multiple sclerosis (MS) and “observe autoimmunological processes in living tissue”; making it possible to see when and where T lymphocytes start to destroy the myelin sheath.
“I’ve spent a lot of time sharing information over the years about myelin repair, actually donated to the Myelin Repair Foundation,” said Abbie Kanter of Lima. “For me it felt like the damage to the myelin was pretty much the reason why we have the problems we do so…why not send my money there?”
BRITTANY Christensen was just 16 when she was diagnosed with multiple sclerosis but says the disease isn't going to stop her from living life to the full.
In fact, the 17-year-old says it's only made her stronger.
She has just returned from a month-long school trip volunteering in India, where she visited orphanages and hospitals helping the needy.
She is now focusing her energy on the Multiple Sclerosis Society SA & NT's Kiss Goodbye to MS campaign, which starts on Wednesday.
In the past two weeks, she has already raised more than $1000 towards the campaign through her Facebook friends.
Brittany, or Britty as she is known to friends, was diagnosed with MS just over a year ago.
At the time, doctors believed the bubbly teenager had Bell's palsy because she wasn't speaking or swallowing, couldn't use her tongue and her entire left side was weak.
But months later, they found three spots on her brain, confirming that she had multiple sclerosis.
Since then, she's been on regular medication and the spots are improving.
But for Brittany and the 23,000 Australians living with the chronic neurological disease, there is no cure.
Brittany, who attends Seymour College, is rallying her friends from school to dress in red during the month of May and raise money for research. To register an event for the campaign or donate money visit: www.kissgoodbyetoms.org
Around 4,000 people in Wales have MS, an inflammatory disease of the central nervous system
Services for people in Wales with multiple sclerosis (MS) are a "postcode lottery", a leading charity has warned.
The MS Society Cymru says less than 60% of people in mid and west Wales can access a neurologist when needed.
North Wales was better served with at least 90% of people having access, and at least 70% in south east Wales.
The charity urged ministers to ensure everyone with MS had the care and support needed. The Welsh government said progress was being made.
The report, being launched in the Welsh assembly on Tuesday, is based on the largest ever survey of people with MS in Wales.
It is a neurological condition which can cause fatigue, vision problems and difficulties with walking for those who have it.
As well as the varying pattern of services available, the study also found that just a third of people who said they needed support finding or keeping a job could get the help they needed and that there were "far longer" waiting lists for wheelchairs in north Wales than south Wales.
A father and son from different parts of the country have highlighted the varying levels of support available.
Ieuan Evans, 70, from Cardigan, was diagnosed with MS 20 years ago.
He has seen a neurologist just once in that time and his nearest MS nurse is based in Morriston Hospital, Swansea, more than 50 miles away.
He said: "Accessing specialists is frustrating for people with MS in my part of Wales - as I don't drive it is very difficult.
"My son lives in Cardiff where services are far easier to access.
Evans' son Aled has lived with MS for thirteen years and finds it upsetting that he receives so much more care than his father."Wherever you live in Wales you should have the same treatment."
Your healthcare team is there to help you get the best care possible for your multiple sclerosis. To get the most from this partnership, it is important that you communicate with them. Part of that communication is providing the information your healthcare team needs to track your progress and determine whether or not your treatment is working. But there may not always be enough time in each visit to talk about everything you want to. You can make the most of the time with your healthcare provider by preparing ahead of time.
My Relapse Report can help. Use My Relapse Report in two ways:
When you’re feeling well: Write down any MS symptoms you have. This will help give you and your healthcare provider a good idea of your baseline state of health (how you felt before your MS relapse). You can also record your relapse history and medication history, including information about your past relapse treatment(s). This will help your healthcare provider determine if the same treatment is appropriate for your next multiple sclerosis relapse.
When you think you may be having an MS relapse: Record (or have a friend or family member record) your MS symptoms and how they are impacting you. Be as specific as possible. And try to track your symptoms using My Relapse Report on a regular basis. This will help you and your healthcare provider understand how your symptoms have changed over time and are affecting your life. It will also help your healthcare provider determine if you’re having a relapse and need treatment.
Print the results and show them to your healthcare provider at your next visit. Please be aware that in order to protect your privacy, your information is not saved on this website. Be sure and print My Relapse Report or your information will be lost.
Click here to begin your relapse report directly from ReThinkMSRelapses.com webpage
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These are medicines that can reduce the frequency and severity of MS attacks, and in some cases can slow the progression of the disabling condition.
Someone living in Northern Ireland with MS was twice as likely to be taking a DMT (68%) than someone with the condition in Wales (30%), for example.
Access to treatment in Scotland and England was only a little higher at 36% and 40%.
In Europe, additional research shows that only Poland and Romania have a smaller proportion of people with MS taking licensed medicines.
The charity's report said that being well informed about the medicines available was crucial.
Those who felt they had enough information about medicines were 32% more likely to be taking a DMT, the survey found, and those with access to a specialist MS nurse or neurologist were more than twice as likely to be taking the appropriate drugs.
Northern Ireland is the only place in the UK where most people with MS are routinely invited every six months to see a neurologist or MS nurse for a review.
On Thursday, Biogen Idec delivered a positive Q1 conference call revising guidance upwards with revenue growth for the full year expected at between 16 percent and 18 percent; Tecfidera – poised to become the market leading multiple sclerosis treatment – is expected to act as the company's key sales growth driver. However, on the same day, Biogen Idec was forced to bat away recent suggestions that the newly-approved MS tablet is associated with cases of progressive multifocal leukoencephalopathy (PML).
Insight, Analysis & Opinion
In letters published in the NEJM on Wednesday, it was highlighted that Fumaderm, a compounded version of dimethyl fumarate (the same active ingredient in Tecfidera), which is also manufactured by Biogen Idec and used to treat psoriasis in Germany, has been linked to a number of PML cases.
One analyst – who wished to remain unidentified – told FirstWord that the cases have been in the public domain for some time, but the timing of the letters to the NEJM (a day before Biogen Idec released its Q1 results) was perhaps "somewhat suspect."
Biogen Idec, note a number of analysts, has fully disclosed the link to PML in the past and during the company's Q1 conference call on Thursday, CEO George Scangos told investors and analysts that the disclosures were both "old news" and "misinformation." On Wednesday, Biogen Idec reiterated that Tecfidera had been used in over 2,600 patients, some of whom have been receiving the drug for over four years, with no reported cases of PML. Previously it has cited that three cases of PML have occurred in over 180,000 patient years of Fumaderm use.
FirstWord's own interviews with key opinion leaders in the MS field support this view and paint the picture of a drug that is not only viewed as being highly effective, but one with a benign safety profile (a view echoed by the FDA, which approved Tecfidera with a clean safety label). Patrick Vermersch – who works in the Department of Neurology at the University of Lille - told FirstWord earlier this month that Tecfidera "is a new generation of fumarate derivatives and we know for maybe two or three decades in Germany this family of drugs are safe, I think, because the drug was used in Germany for 30 years, approximately. And we have no bad feelings concerning the safety."
April 25, 2013 - With the arrival of Tecfidera this spring, people withmultiple sclerosisnow have three oraldrugsto choose from to treat the relapsing form of the disease.
Tecfidera (dimethyl fumarate) joins two other oral MS drugs. Aubagio (teriflunomide) was approved in 2012, and Gilenya (fingolimod) was approved in 2010.
For the 350,000 people in the U.S. who have MS, these drugs represent a treatment breakthrough. Other MS drugs used to treat the relapsing form are injected or given through an IV.
All three oral MS drugs are expensive. Tecfidera's wholesale cost is nearly $55,000 a year. Gilenya and Aubagio cost $60,000 and $45,000 a year.
All three drugs also have side effects. The active ingredient in Tecfidera has been linked to four cases of a rare but sometimes fatal brain disease, progressive multifocal leukoencephalopathy (PML). That side effect was not seen in patients taking Tecfidera during clinical trials, the company making the MS drug says.
With three similar drugs, what do patients need to know?
For answers, WebMD turned to Barbara Giesser, MD, professor of neurology and clinical director of the University of California Los Angeles Multiple Sclerosis Program. She was not involved in the clinical trials for any of the three drugs.
How does Tecfidera work?
It appears to have anti-inflammatory actions and brain-protective actions. The main problem in MS is that immune cells are getting into the brain and the spinal cord and they are attacking the nerves. One of the main ways they cause damage is by inflammation, particularly in relapsing-remitting MS.
So Tecfidera does a number of different things to lower inflammation and lower the ability of the immune cells to get in and attack the central nervous system. Additionally, it may protect nerves from damage.
How do Gilenya and Aubagio work?
Gilenya prevents the T-cells, the immune cells, from getting out of the lymph nodes. I tell my patients it's like the "roach motel" model of immunity. They can check in, but they can't check out.
The T-cells can't get out of lymph nodes and into the blood. If they can't get into the blood, they can't get into the nervous system.
Gilenya also may protect the brain.
Aubagio basically decreases production of T-cells and B-cells, which are also immune system cells.
Has there been a head-to-head comparison of the three oral MS drugs?
No, as far as I know they have not been compared to each other.
The thing is, if you are going to tell a patient about a new drug, the first thing they are going to ask you is, 'Is it better than the old drug?' And what you have to say is these drugs have not been compared against every single one of our older drugs.
You can't compare across [different] trials because there are different patient populations, different conditions, and so on.
For example, Copaxone and most of the interferons reduce relapses by around a third, compared to placebo.
If you look at the three newer drugs, Gilenya vs. placebo reduces relapses by around 54%. Aubagio vs. placebo reduces relapse by around 30%. Tecfidera reduces relapses in the neighborhood of 50%.
It suggests that some of the newer drugs are more effective than our older drugs, but only relatively, because there hasn't been a head-to-head comparison.
What are the major side effects for each of these drugs?
By John Gever, Deputy Managing Editor, MedPage Today
Published: April 25, 2013
Patients diagnosed with clinically isolated syndrome after experiencing a first multiple sclerosis-like attack were significantly less likely to have a second -- conferring a definite MS diagnosis -- after receiving the oral drug teriflunomide (Aubagio), its manufacturer said.
Conversion rates were reduced by 37% with teriflunomide doses of 7 mg/day and by 43% with 14 mg/day compared with placebo during a 2-year phase III trial called TOPIC, according to Genzyme.
Mean actual duration of treatment in the study was 16 months. Discontinuation rates reported by the company were similar in all three study arms, ranging from 8% to 12%.
Other quantitative data were not released. Genzyme said adverse events were similar to those seen in other teriflunomide studies, including elevations in alanine aminotransferase, nasopharyngitis, headache, hair thinning, diarrhea, and paresthesia.
Full study results will be submitted for presentation at a scientific meeting later this year, the company said.
In addition to conversion to clinically definite MS, the study's primary endpoint, outcome measures included progression of MS-like lesions in MRI scans, annualized relapse rate, volume of abnormal brain tissue, and scores on clinical measures of disability and fatigue.
Tanuja Chitnis, MD, a Boston neurologist specializing in multiple sclerosis, likens the human nervous system to a massive jumble of electrical wires. Nerves transmit messages through this vast network all over your body. To protect them from "short circuits," nerves are covered by what's called a myelin sheath, an insulating layer of protein and fat.
In multiple sclerosis, an autoimmune disorder, your immune system mistakenly attacks your own nervous system, starting with the myelin sheath. Specific symptoms — vision loss, balance issues, fatigue, numbness and tingling — will then appear depending on where the damage occurs. In addition, without the myelin, electrical signals in your nervous system can be interrupted or slowed, causing MS symptoms to flare. It is a hallmark of multiple sclerosis that the symptoms caused by faulty nerve signals ebb and flow. An acute flare is often followed by a remission, which can last from months to even years before another episode occurs. Given the cyclical nature of the condition, the course of MS is anything but predictable.
Understanding an MS Flare A multiple sclerosis flare is also called an exacerbation, a relapse, or an attack. A flare can involve either the appearance of new symptoms or the reappearance of older ones. Timing is also important: To be technically classified as a "relapse," symptoms must last for 24 hours and must occur at least 30 days after your most recent flare-up. Dr. Chitnis, assistant professor of neurology and director of the Partners Pediatric MS Center at Massachusetts General Hospital for Children, compares the appearance of MS symptoms to those of a stroke, saying that "while a stroke comes on in a manner of minutes, MS symptoms [generally] come on over the course of several days."
Symptoms of an MS Flare MS symptoms generally vary from person to person. And this certainly holds true in the case of an MS flare. Severe fatigue is common, as are sensory problems, such as numbness and tingling in the arms and legs; vision problems, such as eye pain or blurred vision; weakness and balance difficulties; and bladder and bowel problems.
Causes of an MS Flare While many things have been linked to multiple sclerosis flares, the exact cause of a flare can be difficult to pinpoint. "Flares can be triggered by infections, including [bladder infections]," says Chitnis. And "some evidence suggests that stress may trigger flares, but this is still controversial." One misconception regarding what increases the risk of an MS flare: vaccines. "The evidence is strong that vaccinations do not trigger flares," notes Chitnis.
Preventing an MS Flare Though a multiple sclerosis flare cannot be prevented entirely, avoiding things that trigger attacks can help keep them at bay, at least in the short term. Since flares are sometimes triggered by infection, it's especially important to wash your hands frequently during the cold and flu season and to talk about getting a flu shot with your doctor. Experts also recommend such simple tactics as drinking cranberry juice daily to help protect yourself from bladder infections.
Duration of an MS Flare Flares can last anywhere from a few days to a few weeks, depending on your response to treatment. Sometimes, a brief flare-up of symptoms can occur and then resolve without any treatment at all. This is called a pseudoexacerbation and is not technically classified as a relapse. These pseudoexacerbations are usually brought on by increased body temperature and go away when the body cools down, sometimes in a manner of minutes.
Treatment for an MS Flare Flares can be treated with steroid medications that suppress the actions of the immune system, which helps to keep it from attacking the nervous system. This often slows the progression of a flare. But because the side effects of steroids can be serious, Chitnis says that doctors often weigh the long-term risks of steroid use against the immediate benefits of flare symptom relief.
Recovering from an MS Flare Most people with MS are initially diagnosed with a form of the disease called relapsing-remitting MS. In this type of multiple sclerosis, when the attack on the myelin stops, symptoms gradually lessen. Some people will regain total functioning after flares, in others the recovery may only be partial. Rehabilitation can play an important role in regaining certain functions after flare-ups. A physical therapist, speech therapist, or occupational therapist can be useful additions to your team of health care providers to help you move forward with your life after a flare-up.