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Friday, March 20, 2020

Congress Passes The Families First Coronavirus Response Act

March 19, 2020
On March 18th, the President signed the Families First Coronavirus Response Act (H.R. 6201) - a legislative package that contains important provisions that could affect people living with MS. The U.S. House of Representatives passed this legislation on March 14th and the U.S. Senate passed this legislation on March 18th. Patients with chronic health conditions are uniquely vulnerable to the effects of COVID-19 and the National MS Society will continue to work with Congress on future protections. 

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The Families First Coronavirus Response Act included the following provisions which could impact people living with and affected by MS:
  1. Paid sick days and emergency leave for some employees who become infected or have to take care of children who are home because of school closures. 
    • Workers can receive up to 10 paid sick days to address COVID-19, or care for a family member (if they work for a business with fewer than 500 employees). 
    • Workers are now also entitled to take longer-term paid family and medical leave to care for a child whose school or place of care is closed.
    • Employers are reimbursed through a payroll tax credit, which applies to for-profit and non-profit employers.
    • Expires at the end of 2020.
  2. Expansion of no-cost coronavirus testing.
    • Requires coverage or reimbursement to labs and providers for COVID-19 diagnostic testing at no cost to that patient, regardless of health insurance type.  The legislation also makes available provider reimbursement for testing of the uninsured.
  3. Increasing federal support for Medicaid spending to ease financial strain on state budgets during this crisis so they can better address the health needs of their populations.
  4. Provides federal support via emergency grants to states to underwrite unemployment benefits in states where unemployment enrollment spikes.  (For states to be eligible for these grants, the number of unemployment compensation claims must increase by at least 10% over the same quarter in the previous calendar year).
  5. Encourages the use of telemedicine for Medicare population (more detailed information below). 
  6. Suspending work requirements for Supplemental Nutrition Assistance Program (SNAP) benefits (also known as food stamps) in order to facilitate social distancing and reflect economic realities during this crisis. 
    • It also allows states to request waivers to provide emergency benefits to existing SNAP beneficiaries up to the maximum monthly allotment ad gives the U.S. Department of Agriculture (USDA) the ability to allow state flexibility managing SNAP caseloads. State waiver requests and responses from USDA will be available online. 
  7. Increasing protections for food security including:
    •  $400 million for The Emergency Food Assistance Program ($300 for food/$100 for storage)
    • $100 million food security assistance for territories
    • $250 million Senior Nutrition program in the Administration for Community Living (ACL)
  8. Increasing protections for child nutrition including:
    • Providing the USDA the authority to issue nationwide school meals waivers by eliminating paperwork for states and helping schools adopt and implement programs more quickly.
    • Allowing all child and adult care centers to operate as non-congregate.
    • Waiving all meal pattern requirements if there is a disruption to the food supply.
    • Allowing states to use SNAP money to give extra to families to school age children who qualify for free or reduced-priced meals (benefits equal to the value of school meals).
    • Increasing access to WIC by providing $500 million extra for the WIC program, allowing them to certify participants without being physically present at WIC clinics, and waiving stocking requirements for WIC.
  9. Providing relief to renters and homeowners. 
    • The Department of Housing and Urban Development will be suspending foreclosures and evictions for mortgages insured by the Federal Housing Administration until the end of April 2020. 
In addition to the new law, the Administration implemented temporary changes to improve access to telehealth, including: Stay up-to-date on the latest information on COVID-19 from the National MS Society here. We expect additional support and stimulus packages to move through Congress over the next week or two.

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Thursday, March 19, 2020

5 ways to combat boredom when you’re stuck at home

Keeping your distance during the COVID-19 pandemic

With the Center for Disease Control and Prevention (CDC) recommending social distancing and self-isolation for the next few weeks to help limit the spread of the coronavirus, it’s easy to feel lonely, bored and disoriented. Here are some tips for maintaining social connections, interest and independence when you’re stuck at home.
1. Get some culture
Travel to NYC, London and Paris all in one day! Enjoy virtual tours of museums throughout the world and art classes in the medium of your choosing from the comfort of your own home.
Tip: Google Arts & Culture lets you discover millions of museums, art collections, historical sites and stories—virtually.
2. Revamp your exercise routine
When the recreation center or gym is temporarily closed, take exercise outdoors or try a virtual class. Specialists can help develop home-based exercise programs and offer suggestions for accommodations. The variety will give you a new challenge, and you might even find a new sport to enjoy—tennis anyone?
Tip: Not only is exercise essential to general health and well-being, exercise is helpful in managing MS symptoms. Check out ways to exercise and stay active while living with MS.

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3. Manage stress through meditation
Stress, anxiety and depression can make isolation seem unbearable, but it doesn’t have to be. Not only can mindfulness techniques teach you to become more aware of your feelings and emotions, they can also help you learn to relax your mind and body and help reduce stress.
Tip: Learn strategies for out-stressing stress through meditation, yoga, positive affirmations and more.
4. Find a new hobby
With more time at home, you finally have time to try a new hobby! Cooking, gardening, journaling, puzzles and reading all engage your mind, spark creativity and stimulate thinking and problem-solving skills.
5. Go virtual
When face-to-face communications are limited, Facetime, Instagram, Twitter, Facebook, blogs and online chat groups can be a lifesaver. Connections maintained virtually can provide an outlet for expressing your emotions and a way of empathizing with others in a similar situation.
Tip: Check out the unofficial channels people living with MS use to stay connected.

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What's the Difference Between COVID-19 and the Flu?

Early on in the outbreak of COVID-19, comparisons to the flu — from symptoms to mortality rate and potential impact — were the talk of the town. As we have seen the new coronavirus spread and governments take drastic actions to slow that spread, however, it’s clear we’re facing something we’ve never seen before. In fact, it’s not necessarily helpful to compare COVID-19 with other illnesses because it’s brand new to humans.
To help clear things up, here’s what to know about COVID-19 versus the flu.

What Is COVID-19?

COVID-19 (SARS-CoV2) is a type of coronavirus that primarily affects the respiratory system and lungs. It causes symptoms such as fever, cough and shortness or breath, though more recent research suggests it can also cause digestive issues. Those most at risk for a severe course of illness include people over age 65 and those with underlying medical conditions.
According to the Centers for Disease Control and Prevention (CDC), there are currently more than 7,000 COVID-19 cases in the United States and nearly 100 people have died. To protect yourself and others who are more vulnerable in your community,  the CDC recommends practicing social distancing (staying home as much as possible and staying at least six feet away from others) and washing your hands often.

How Is COVID-19 Different Than the Flu?

One of the reasons it’s tempting to compare COVID-19 to the flu is because they share an overlap of symptoms, including fever, cough and fatigue. Not to mention, we’re all familiar with the flu. However, there are several fundamental differences between COVID-19 (as a coronavirus) and influenza as a virus.
“The two viruses share some properties, but are quite different,” Bettie Steinberg, Ph.D., provost at the Feinstein Institutes for Medical Research, told The Mighty. “Both cause respiratory infections and both have RNA as their genetic structure, which makes them much more likely to mutate and change. However, their structures are quite different.”

How Contagious is COVID-19 Compared to the Flu?

Though more research is needed on COVID-19, one of the differences between the two viruses is how contagious they are and when. The flu, which has affected humans for thousands of years, has an incubation period of one to four days. According to the CDC, you’re infectious and at risk of spreading the flu about a day before you show symptoms and up to five to seven days after you get sick.
The flu has a smaller window when you’re infectious and typically spreads to fewer people. One person with the flu typically infects 1.3 other people. COVID-19 is much more contagious — every one person who is infected spreads it to approximately 2.5 other people even before symptoms show up.
With COVID-19, you may not start to show symptoms for two to 14 days (though five days is the average). During that whole time, while you’re asymptomatic and not showing any symptoms or mild symptoms, you are likely infectious and can spread COVID-19.
Experts believe it’s people who aren’t showing any or many symptoms moving around their communities contributing to the rapid spread of COVID-19. That’s why social distancing is so important. Steinberg said modeling our response to contain COVID-19 based on past flu epidemics isn’t a perfect example, and this may be one reason why.

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Mortality Rate of COVID-19 Versus the Flu

Many people pointed to the mortality rate of COVID-19 versus the flu as a way to spur people into action and take the COVID-19 pandemic seriously. Indeed, COVID-19 seems to have a higher death rate than the flu.
The flu’s mortality rate calculated over the last 10 years is 0.1%, which is still between 22,000-55,000 deaths each year. Best estimates so far indicate the mortality rate of COVID-19 may be around 1.4%. The World Health Organization (WHO) has reported nearly 208,000 cases of COVID-19 around the world and more than 8,500 deaths.
The mortality rate of COVID-19 is difficult to pin down at this early stage of the pandemic. We don’t have 10 years worth of data to calculate, testing shortages worldwide mean we don’t know the true scope of COVID-19 and many factors impact the mortality rate. Countries like Italy where the health care system is overwhelmed, for example, report a higher death rate.

Preventing COVID-19 Versus the Flu

Another major difference between COVID-19 and the flu is the options we have for treatment and prevention. We have a flu vaccine to reduce the number of people who get that virus each year. If you get the flu, medications like oseltamivir (brand name Tamiflu) can help reduce the severity of your symptoms. We don’t have prevention or treatment options for COVID-19 yet because it’s brand new in humans.



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Genentech is working with the U.S. Food & Drug Administration (FDA) to initiate a randomized, double-blind, placebo-controlled Phase III clinical trial in collaboration with the Biomedical Advanced Research and Development Authority (BARDA), a part of the U.S. Health and Human Services Office of the Assistant Secretary for Preparedness and Response (ASPR), to evaluate the safety and efficacy of Actemra® (tocilizumab) plus standard of care in hospitalized adult patients with severe COVID-19 pneumonia compared to placebo plus standard of care.

This press release is below and can be found HERE.

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Transforming patients’ lives through science™ - Bristol Myers Squibb

Transforming patients’ lives through science™

At Bristol Myers Squibb, every day is a new frontier. Every innovation, every treatment is a chance to give people back their lives.
Giovanni Caforio, Chairman and CEO

To reflect the transformation of our company, we have evolved our company brand.


We drew inspiration for our brand and brand attributes from our patients and our people. Our symbol, the hand, is a simple, universal expression of healing, of giving and receiving care. It is a representation of humanity, of the personal touch we bring to our work and to every treatment we pioneer.


Our brand fully embodies our vision, and embraces our commitment of compassionate science and putting patients first.


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Wednesday, March 18, 2020

Mobility Support Devices for Secondary Progressive MS: Braces, Walking Devices, and More

Secondary progressive multiple sclerosis (SPMS) can cause a variety of symptoms, including dizziness, fatigue, muscle weakness, muscle tightness, and loss of sensation in your limbs.
Over time, these symptoms may affect your ability to walk. According to the National Multiple Sclerosis Society (NMSS), 80 percent of people with MS experience challenges walking within 10 to 15 years of developing the condition. Many of them can benefit from using a mobility support device, such as a cane, walker, or wheelchair.

It may be time to consider using a mobility support device if you’ve been:
  • feeling unsteady on your feet
  • losing your balance, tripping, or falling frequently
  • struggling to control the movements in your feet or legs
  • feeling very tired after standing or walking
  • avoiding certain activities because of mobility challenges
A mobility support device may help prevent falls, conserve your energy, and increase your activity level. This can help you enjoy better overall health and quality of life.
Take a moment to learn about some of the mobility support devices that may help you stay mobile with SPMS.
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Tuesday, March 17, 2020

Guidance for the use of disease modifying therapies during the COVID-19 pandemic

People with MS have asked for guidance on the use of Disease Modifying Therapies (DMTs) during the COVID-19 pandemic. There are numerous recommendations circulating that attempt to provide clarity and guidance, however, differences among the recommendations have created confusion. DMT decision making varies significantly from country to country, ranging from highly provider-directed to a collaborative decision-making model.
The MS Coalition has endorsed global advice from the MS International Federation on DMT use during the COVID-19 pandemic. Their recommendations provide detailed guidance for the initiation and continuation of DMTs
The MS Coalition has also endorsed recommendations from The National MS Society’s National Medical Advisory Committee, which believes DMT decisions should be individualized and made collaboratively between the person with MS and his/her healthcare provider.  These recommendations are:
  1. People with MS should follow CDC guidelines and these additional recommendations for people at higher risk for serious illnesses from COVID-19.
  2. People with MS should continue disease modifying therapies (DMTs) and discuss specific risks with their MS healthcare provider prior to stopping a DMT.
  3. Before starting a cell depleting DMT* or a DMT that carries warnings of potentially severe increase in disability after stopping**, people with MS and their MS healthcare providers should consider specific risks (e.g. age, comorbid health conditions, location) and benefits.
We are continuing to monitor this quickly evolving situation and these recommendations may be modified as data becomes available.
* Cell depleting therapies include: Lemtrada, Mavenclad, Ocrevus and Rituxan (used off-label in MS)
** DMTs with a warning of potentially severe increase in disability after stopping include: Gilenya and Tysabri

*** Members of the MS Coalition include: Accelerated Cure Project for Multiple Sclerosis, Can Do MS, Consortium of Multiple Sclerosis Centers, International Organization of Multiple Sclerosis Nurses, MS Views and News, Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, National Multiple Sclerosis Society and United Spinal Association


The Importance of Getting Out of the House Cannot Be Overstated

March 6, 2020

When multiple health problems pile up, it’s natural to want to hibernate, but it can get lonely and boring!

Learn how the blogger Trevis Gleason finds a workaround to staying home.

It can sometimes be too easy to sequester oneself, but it’s so important not to.

I had a physiotherapy appointment recently, and as I rode in the car, I noted aloud how green the pastures and fields had become. Then I started to think back and realized that since I’d been released from the hospital on December 21, I hadn’t been more than 2 miles from our home.

Multiple sclerosis (MS) and other health mangles have wrung me nearly dry since that Christmas clemency, so it was both easy and rather required that I stay close to base. But even in a state of doubled fatigue, I was acquiring a moat between Milltown Cottage and even our closest neighbors.Click HERE to Register for the MS Beacon Newsletter

There’s Only So Much Online Solitaire One Can Play

I did have to amend my first recollection, as I had been further afield than 2 miles. That one time, however, we were away before light for a follow-on procedure under general anesthetic and home well after dark in a drug-induced haze, so I could be excused for my lack of memory of that trip.
Add to this the fact that my wife has recently taken on extra days of work to cover someone’s maternity leave, and my situation was teetering toward desperate. My mind was turning to mush; my ear for the lyric, local accent was beginning to numb; and there’s only so much online solitaire one can play … I had to figure a way to get out and around.
A Taxi Gets Me Out for a Shop, a Flirt, and a Pint
As most of us with chronic illness are wont to do, I found a work-around.
Even the ¾-mile trek into the town was too much for me, so a local taxi kept me from having to call on friends for a lift (though they have quite willingly offered such service). I can’t get around very easily in my current state, so I don’t do much when I get there, but at least I’m out of the house.
I pick up a couple of things we might need from the shop, which is never a lonely encounter in our town. It affords me a chance to catch up with a bit of gossip, show that I’m not at the undertaker’s yet, and flirt with the ladies at the cash. Never has a trip for a liter of milk been more satisfying.
Then, the best part of my new Friday routine: A few doors down from the grocery is my local pub.
A quiet back room where I can read the papers, complain about the price of wool with some of the regulars, and enjoy a self-prescribed Rx pint of the black stuff. Caryn collects me on her way home from work, and we grab a simple takeaway for our dinner.
CONTINUE reading Trevis' story by clicking here .


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The Connection Between Depression and MS

When you have multiple sclerosis (MS), symptoms like fatigue, numbness, and weakness may be your main concern. But depression is a common symptom, too.
People with MS are up to two or three times more likely to become depressed than those without the condition. There are a few reasons why up to half of people with MS will experience depression at some point in their lives:
  • Nerve damage can affect the transmission of signals related to mood.
  • Living with a chronic illness can cause stress and anxiety.
  • Drugs like steroids and interferons that treat MS can cause depression as a side effect.
Often, depression is the one MS symptom that’s overlooked and left untreated. Here are a few tips to help you care for your mental health while managing your MS.

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1. Check your symptoms

Everyone feels down from time to time. A brief shift in your mood doesn’t necessarily mean you’re depressed. But if you’ve continuously been sad for two weeks or longer, it’s time to take a closer look.
Ask yourself these questions:
  • Do you always feel sad, hopeless, helpless, worthless, or empty?
  • Are you more irritable than usual? Do you snap at the people around you?
  • Have you lost interest in things you once loved to do? Does nothing you do seem to excite you?
  • Do you feel extra tired or drained of energy?
  • Do you have trouble sleeping, or sleep too much?
  • Do you have difficulty concentrating or remembering?
  • Do you notice strange aches and pains that you can’t connect to a physical cause?
  • Have you noticed any changes in your appetite? Either eating too much or too little?
If you’ve had any of these symptoms, call your doctor or a mental health professional for help.

2. Talk to your doctor

If you think you’re depressed, tell your primary care doctor. Just as with other conditions, there are medications and alternative therapies available to help you feel better. Also, inform the specialist who treats your MS. It’s possible that a change in your MS medication could be enough to improve your mood.
It’s also helpful to talk to a mental health expert like a psychologist, psychiatrist, or counselor. They can offer strategies to help you cope better with the stresses of your condition. Ideally, find someone who has experience working with people who have chronic conditions like MS.

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Monday, March 16, 2020

From The CDC - Center for Disease Control : Coronavirus Disease 2019 (COVID-19)

Who is at higher risk?
Early information out of China, where COVID-19 first started, shows that some people are at higher risk of getting very sick from this illness. This includes:
  • Older adults
  • People who have serious chronic medical conditions like:
    • Heart disease
    • Diabetes
    • Lung disease

Get ready for COVID-19 now

Take actions to reduce your risk of getting sick
Group of senior citizens
If you are at higher risk for serious illness from COVID-19 because of your age or because you have a serious long-term health problem, it is extra important for you to take actions to reduce your risk of getting sick with the disease.
  • Stock up on supplies.
  • Take everyday precautions to keep space between yourself and others.
  • When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.
  • Avoid crowds as much as possible.
  • Avoid cruise travel and non-essential air travel.
  • During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.
Have supplies on hand
Prescription medicines and groceries
  • Contact your healthcare provider to ask about obtaining extra necessary medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a prolonged period of time.
  • If you cannot get extra medications, consider using mail-order for medications.
  • Be sure you have over-the-counter medicines and medical supplies (tissues, etc.) to treat fever and other symptoms. Most people will be able to recover from COVID-19 at home.
  • Have enough household items and groceries on hand so that you will be prepared to stay at home for a period of time.
Take everyday precautions
washing hands
Avoid close contact with people who are sick.
Take everyday preventive actions:
  • Clean your hands often
  • Wash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing, or having been in a public place.
  • If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol.
  • To the extent possible, avoid touching high-touch surfaces in public places – elevator buttons, door handles, handrails, handshaking with people, etc. Use a tissue or your sleeve to cover your hand or finger if you must touch something.
  • Wash your hands after touching surfaces in public places.
  • Avoid touching your face, nose, eyes, etc.
  • Clean and disinfect your home to remove germs: practice routine cleaning of frequently touched surfaces (for example: tables, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones)
  • Avoid crowds, especially in poorly ventilated spaces. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.
  • Avoid all non-essential travel including plane trips, and especially avoid embarking on cruise ships.

  • If COVID-19 is spreading in your community
    Practice social distancing and stay away from anyone who is sick
    Take extra measures to put distance between yourself and other people to further reduce your risk of being exposed to this new virus.
    • Stay home as much as possible.
    • Consider ways of getting food brought to your house through family, social, or commercial networks
    If a COVID-19 outbreak happens in your community, it could last for a long time. (An outbreak is when a large number of people suddenly get sick.) Depending on how severe the outbreak is, public health officials may recommend community actions to reduce people’s risk of being exposed to COVID-19. These actions can slow the spread and reduce the impact of disease.
    Have a plan for if you get sick
    on the phone with doctor
    • Consult with your health care provider for more information about monitoring your health for symptoms suggestive of COVID-19.
    • Stay in touch with others by phone or email. You may need to ask for help from friends, family, neighbors, community health workers, etc. if you become sick.
    • Determine who can care for you if your caregiver gets sick.
    Watch for symptoms and emergency warning signs
    • Pay attention for potential COVID-19 symptoms including, fever, cough, and shortness of breath. If you feel like you are developing symptoms, call your doctor.
    • If you develop emergency warning signs for COVID-19 get medical attention immediately. In adults, emergency warning signs*:
      • Difficulty breathing or shortness of breath
      • Persistent pain or pressure in the chest
      • New confusion or inability to arouse
      • Bluish lips or face
    *This list is not all inclusive. Please consult your medical provider for any other symptoms that are severe or concerning.

    What to do if you get sick

    • Stay home and call your doctor.
    • Call your healthcare provider and let them know about your symptoms. Tell them that you have or may have COVID-19. This will help them take care of you and keep other people from getting infected or exposed.
    • If you are not sick enough to be hospitalized, you can recover at home. Follow CDC instructions for how to take care of yourself at home.
    • Know when to get emergency help.
    • Get medical attention immediately if you have any of the emergency warning signs listed above.

    What others can do to support older adults



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