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Saturday, June 30, 2012
Friday, June 29, 2012
Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families:
- Prohibition of coverage denials based on pre-existing conditions: Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need.
- Prohibition of lifetime limits: Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care.
- Elimination of annual limits: Similar to lifetime limits, many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care.
- Extension of parent’s insurance to 26: Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy.
- Closing the Medicare Part D Coverage Gap: Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage.
- Pathway for Biosimilars: The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future. The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed--which is good news for anyone who uses biologic therapies.
Although many people with MS have health care coverage, 70% of those with health insurance still struggle with the cost of health care and 30% are forced to spend less on food, heat, utilities and other necessities in order to afford their health care. Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive.
On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs. Unlike some other diseases, MS is a lifelong illness--typically diagnosed between the ages of 20 and 30s--prime career and family building years. Because of the high cost and complications that can be associated with the disease, the National MS Society has long supported many of the policies that were included in the law just upheld by the Supreme Court.
With guidance of people living with MS, the Society adopted a set of National Health Care Reform Principles several years ago and, as an organization. Our approach is to support legislation that is in line with those principles. We intend to continue to work with Congress and the Administration in pursuit of public policies that address the needs of those impacted by MS.
For assistance with specific health insurance questions, people with MS, their families or healthcare providers may speak with an MS Navigator by calling 1-800-344-4867 (FIGHT MS). You can find additional information on our website.
In a major disaster, emergency workers may not be able to reach everyone right away and, in some cases, it may take three or more days for help to arrive. Having a plan for your family and their needs will help ensure their safety and comfort during these difficult times. The Florida Division of Emergency Management offers a Family Disaster Planning website to help Floridians create a customized family disaster plan. Floridadisaster.org/family allows each family to calculate the amount of food and water needed in the event of an emergency and gives supply checklists, provides local emergency contacts and evacuation routes. Each personalized plan also includes a checklist of things to do before, during and after a disaster.
If your plan includes evacuating to a safer location, determine where you will go in advance. If you are ordered to evacuate, don’t delay. Traffic congestion will only worsen as time goes on. Select the evacuation destination that is nearest to your home to minimize the distance you will have to travel. If possible, make arrangements to stay with a friend or relative who lives nearby, but will not be ordered to evacuate. Discuss the details of this plan with the friend or relative well before a hurricane is approaching.
All pet owners should have an emergency plan that includes an evacuation plan and adequate supplies for your pet in case of a disaster. Because many shelters cannot accommodate pets, be sure to find out in advance if the place you plan to go will welcome your pet, too. Keep in mind that shelters that allow pets require proof of license and vaccination and pets must be in an ‘airline approved’ pet carrier. Never leave your pets at home if you choose to evacuate. If it’s dangerous for you, it’s dangerous for your pet. For a list of pet friendly shelters in your area, contact your local emergency management department or visit www.floridapets.net/petfriendlyshelters.html. For a list of pet friendly hotels and motels, visit www.petswelcome.com. For guidance on creating a plan for large animals and livestock, visit the Florida Department of Agriculture and Consumer Services’ resources for disaster preparedness at www.freshfromflorida.com/ai/.
This message was thoughtfully prepared for you by S. Schlossman
Thursday, June 28, 2012
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“What does fatigue feel like?”
When asked to describe the feeling of fatigue, many who have experienced it are at a loss for words.
It is very hard to explain to someone who hasn't been through it,” says one woman. “Words like 'exhaustion' are so overused that they've lost all meaning. There aren't words strong enough to describe this feeling.” Others offer analogies. “Imagine wearing a heavily weighted suit,where every movement you make takes real effort,” suggests one patient. “How long could you continue like that?” Another likens fatigue to “the worst flu you've ever had — not the sickness, just the inability to move or think that comes with it. But unlike the flu, it doesn’t go away.”
When fatigue strikes, it can make it impossible for a person to perform even the simplest tasks.
“Some evenings when I come home, I have to ask my wife to unbutton my shirt,” one man explains. “It takes all the energy I have just to get through the day.” “Some days it is so bad I just want to cry,” relates a young woman who struggles with fatigue, “but I don’t even have the strength it takes to sob.”
“But You Were Fine Yesterday!”
One of themost difficult aspects ofMS-related fatigue is its unpredictable nature. LikemostMS symptoms,fatigue may come and go. Some may experience fatigue daily, but some individuals don’t know when fatigue will hit. This is frustrating both for the person experiencing fatigue, and for those who rely on them. It is important to remember that the person with MS-related fatigue has no more knowledge or control over when fatigue strikes than you do, and to develop coping mechanisms together.
“What can I do?”
The most important thing you can do is understand. Your loved one may already be experiencing grief, anxiety or anger because of fatigue. It may be very difficult for him or her to accept that they cannot do all the things they want to do because of this condition. They may be worried that others will think they are lazy or ‘useless’. They may be afraid that they will become unable to work, keep up with responsibilities at home, or meet the expectations of their spouse or children. To know that you understand and care about what they are going through can go a long way toward easing these feelings. You can help your loved one learn to cope with fatigue. For those who experience fatigue, it is always important to have a Plan B. What if that person is too fatigued to cook dinner? What if he or she tires out in the middle of a shopping trip? Have a backup plan in place to help when fatigue strikes. Be ready to help get the vital tasks accomplished, and be understanding when non-vital tasks are set aside.
Conserving energy is also important for those with fatigue. The less energy that is wasted in unnecessary effort, the more energy they will have to devote to daily needs. Try not to place undue expectations on your loved one. Are there responsibilities that can be shared? Are there things that can be done to simplify their tasks? Can outside sources offer assistance?
Today, there are treatments that can reduce the severity of fatigue for some people, and therapeutic techniques to help manage its effects. But the understanding and support of family and friends are the best coping tools a person with MS-related fatigue can have.
Everyone Gets Tired!
Have you said this to your loved one with MS? While it is true that everyone does experience
tiredness, not everyone experiences the medical condition called fatigue. Fatigue is the most common symptom among MS patients, affecting nearly 80% of those diagnosed. For family, friends, and loved ones, it can be the most difficult symptom to understand. It is important to comprehend that fatigue and tiredness are not the same thing.
“It's been a long day. I'm fatigued, too.”
Are you really fatigued, or are you tired? A quick glance at a dictionary may help you begin to understand the answer to this question. Tiredness is defined as being in need of rest or sleep, or weakened and made less active by exertion. Fatigue, on the other hand, is defined as mental or physical exhaustion. A second definition, listed as a term used in physiology, explains further: inability to respond to stimulus, temporary inability of an organ or part such as a muscle or nerve cell to respond to a stimulus and function normally.
Being tired is a normal response to the body's need for rest following a period of exertion or activity.
Sometimes tiredness can be severe, but it can almost always be remedied with a good night’s sleep. Proper rest, nutrition, and a healthy lifestyle can often prevent tiredness. The same cannot be said for fatigue. Fatigue is a condition that interferes with a person's ability to function.
“What causes it?”
The cause of MS-related fatigue is not completely understood, but recent research indicates that fatigue is tied to widespread axonal (nerve fiber) damage in the central nervous system caused by the disease. This damage can interfere with the transmission of nerve impulses, and the body expends extra effort to compensate for the interference. One woman with MS likens the central nervous system to a highway, with messages traveling along nerve fibers to various parts of the body. “The lesions in my brain are similar to a road block that you have to take a detour around while driving. It takes more energy and time for the nerve signals to get around those lesions, just as your car would use more gas to get around that road block.” The extra effort required for the brain to communicate instructions to the body is a probable cause of MS fatigue.
“You just need to be more active. Exercise!”
“Reduce your stress.”
“You should try vitamins.”
Family and friends of people with fatigue often make well-meaning suggestions such as these. While rest, good nutrition, and a low-stress environment may reduce the severity of fatigue, it is unlikely that these measures will alleviate it entirely. Appropriate exercise as part of a regular routine may be beneficial toward preventing fatigue, but exercising while experiencing fatigue is not advisable.