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Disability-Specific Recommendations for COVID-19

[Update, March 16]: COVID-19 Outbreak Labeled a “Pandemic” and a “National Emergency.” Plus Additional Information for those with SCI/D

The World Health Organization labeled the COVID-19 outbreak a “pandemic” last Wednesday and on Friday President Trump declared a national emergency, which will give states additional tools to combat the virus. These announcements do not change any recommendations for how to prevent the spread of the virus, though many states are now stepping up “social distancing” efforts such as closing schools and banning large gatherings. The Atlantic recently asked public health experts about the do’s and don’ts of individual social distancing, which can be found here.

Sections below that have new information have been labeled “Updated”

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You may think you’ve heard more than you can handle about the recent outbreak of COVID-19. But misinformation is rampant, and it can be hard to know what information to trust. So here’s a primer about COVID-19 that includes disability-specific recommendations for dealing with this outbreak and how to find up-to-date information you can trust.

What It Is [Updated March 16]

COVID-19 is a novel respiratory infection that’s part of a large family of viruses known as coronavirus. Some coronaviruses have relatively mild symptoms, but others, such as SARS and MERS, can cause much more severe symptoms, like pneumonia, kidney failure and even death. COVID-19 can also cause these types of severe symptoms, especially for those with pre-existing health complications, but so far it appears that most people who are infected experience milder symptoms, like fever and a cough. Those at greater risk include:

• People with higher level injuries who have impaired lung function, especially those who require the use of a ventilator.

• People with MS or other immunocompromising disorders, especially those whose treatment includes immunosuppression drugs.

• People who have underlying chronic health conditions, such as high blood pressure, heart disease or diabetes.

• People who have underlying acute health conditions, such as skin breakdown or urinary tract infection, are also at increased risk of severe symptoms associated with COVID-19, says Lindsey Freysinger, who has a Master’s of Science in nursing, is enrolled in the University of Michigan’s Doctorate of Nursing Practice program and has a C5-6 incomplete SCI. She explains that if anyone with an acute condition were to contract COVID-19, there would be two separate issues for their immune system to fight, increasing the risk of severe symptoms for both. Freysinger recommends that anyone in this situation be vocal with their health professionals to make sure they are proactively managing both issues instead of only focusing on Covid-19.

How It’s Transmitted [Updated March 13]

COVID-19 is spread in the same way that most other respiratory viruses are — through exposure to virus-laden droplets released when an infected person coughs or sneezes. If those droplets reach the nose, mouth or eyes of another person, that person could become infected. According to the CDC, current evidence suggests that novel coronavirus may remain viable for hours to days on surfaces made from a variety of materials. If an individual touches a surface with viable virus on it and transfers the virus to their mucus membranes (nose, eyes or mouth, most likely), they could be become infected.

There is controversy, and no clear evidence either way, as to whether the virus could have airborne transmission, giving it a wider range than if it’s transmitted only through droplets. Experts currently believe that people are most contagious when they are most symptomatic, though it is possible to someone to shed the virus even when they’re absent of symptoms.

How to Prevent Infection and Transmission [Updated March 13]

The steps that experts recommend for preventing infection from COVID-19 are the same for flu prevention:

• Wash your hands for at least 20 seconds. Some people recommend singing a chorus to a favorite song in your head to help you gauge the time. If you have limited hand and/or arm function that makes hand-washing at a sink difficult, then an alcohol-based hand sanitizer that’s at least 60% alcohol is sufficient. Frequent hand washing and sanitizer use can dry out skin, so you may need to use lotion more than normal to avoid cracks and other skin problems.

• Avoid touching your face. It’s thought that infections like coronavirus can’t enter your system through your skin. They need a more permeable path such as the mucus membranes of your nose, mouth and eyes. If you’re able to stay six feet away from symptomatic people, as experts recommend, and keep your hands away from your face, your chances of contracting the virus are much reduced.

• Cover your cough, but not with your hand. If you cough into a tissue, throw it away. If no tissue is available, cough into your elbow.

• Regularly disinfect surfaces, especially those that are regularly touched. High-concentration (70%) ethanol alcohol mixtures, hydrogen peroxide and bleach are all effective disinfectants. Manual wheelchair users, especially those at higher risk of severe symptoms due to secondary complications, should consider regularly disinfecting their push rims. Bleach wipes are easy and effective.

• Avoid contact with symptomatic people.

• Avoid crowds or places where lots of people congregate.

This is a developing situation and there may be additional precautions for people at risk of developing severe symptoms as more becomes known.

How to Manage Caregivers

For those who rely on personal assistance services, the COVID-19 outbreak can be especially worrisome. You can’t quarantine yourself to prevent getting the virus when you’re reliant on extra hands to help with your daily needs. Keep in mind:

• You are well within your rights to ask caregivers to wear a mask if they have been in contact with anyone who has shown possible symptoms of the flu or COVID-19, even if they themselves aren’t symptomatic.

• You can ask caregivers to wash their hands or use hand sanitizer before each time they touch you.

But what are you supposed to do if your caregivers stop showing up to work or if your homecare agency cuts hours because of staffing shortages? Unfortunately, we don’t have many brilliant solutions. The New York-based Center for Disability Rights published an “Action Steps for Attendant Service Users” guide that is probably the most helpful document out there right now. But still, as Ian Ruder notes in his blog, “Ensure you have sufficient backup attendants” isn’t exactly a realistic option for a lot of people. Even without an infectious disease scare, homecare workers are already in short supply.

Everyone’s situation is different, so the best bet may be to plan according to your individual scenarios if you lose personal assistance:

• Are there tasks you could accomplish on your own if you have the proper supplies and advanced preparation?

• Are there family members who could help with some tasks, friends who could help with others?

• Have conversations to prepare anyone you may need to rely on in an emergency.

• If you don’t have any other options, contact your local CIL or other disability-support organizations to see if there are any resources available.

How to Stay Informed [Updated March 13]

The COVID-19 outbreak is a rapidly evolving medical situation. As more data becomes available to health researchers, guidelines and best practices may change. Don’t trust information on social media unless you can verify it through multiple, trusted sources. The following organizations can be trusted for basic info, but pay attention to dates and times that updates are posted:

• Shepherd Center has already published a helpful, disability-specific guide to COVID-19. Check here for any additional updates.

• World Health Organization

• National Institutes of Health

• The Administration for Community Living has information specific for people with disabilities and older adults.

• Centers for Disease Control

The New York Times is updating its coverage every few minutes, and the Washington Post offers a free Coronavirus newsletter.

How to Stay Safe [Updated March 16]

While this may all seem overwhelming, it doesn’t need to be. Complete some basic preparations such as having a supply of non-perishable foods, medical supplies, prescription and other medications, and other necessities. Wash your hands and cover your cough, and ask those around you to do the same.

As now recommended by many health authorities, practice social distancing. Even if you’re not symptomatic or at high-risk, limiting public interactions helps to limit the spread of the virus. The numbers and locations of confirmed COVID-19 cases are likely to change rapidly as testing becomes more widely available. Until there is more widespread testing data, its best to play it safe — for you and those in your community who may be at higher risk — by following all available precautions.

Dr. Jerome Stenehjem, the medical director at Sharp Rehabilitation Hospital in San Diego, gives this advice for people with SCI/D:

“If you think you are ill, call your doctor instead of coming to the ER or hospital. If you are having trouble breathing, then you need to come to the hospital. In the meantime, chill. No one ever stayed healthy by worrying. Lastly, stay abreast of national and local updates as recommendations may change.”

Source; New Mobility Magazine: https://www.newmobility.com/2020/03/disability-specific-recommendations-for-covid-19/

ISPOR & FDA are hosting a summit on Patient-Preference Information

ISPOR-FDA Summit 2020: Using Patient-Preference Information (PPI), in Medical Device Regulatory Decisions: Benefit-Risk and Beyond. This summit is hosted by the U.S. Food and Drug Administration’s(FDA), Center for Devices and Radiologic Health (CDRH), and is co-sponsored by the International Society of Pharmacoeconomics & Outcome Research (ISPOR). It is a one-day event on March 31, 2020 on the FDA White Oak Campus. In-person registration is free and the meeting will be webcasted

Here is the link: : https://www.ispor.org/conferences-education/conferences/upcoming-conferences/ispor-fda-summit-2020/about/registration-information.

Prior to the workshop is a webinar that talks about what PPI is. We encourage you and your members to tune in.
https://www.ispor.org/conferences-education/education-training/virtual/webinars/patient-preference-information-what-it-is-and-what-it-is-not)

Attend to learn more about Patient Preference Information.

U.S. FDA Public Meeting – Communication About the Safety of Medical Devices

The U.S. Food and Drug Administration’s Public Meeting – Communication About the Safety of Medical Devices on April 1, 2020. Please be sure to register to attend the meeting by March 18, 2020.

During this meeting, they will share the FDA’s current practices about medical device safety communications, including development, content, and format. During the public meeting, attendees will hear from various stakeholders—including patients, caregivers, health care providers, regulated industry, and the media—about how we can improve our safety communications to assure they receive the information they need in a timely, clear, and consistent manner.

Follow this link to register and read more on the event docket: https://www.fda.gov/medical-devices/workshops-conferences-medical-devices/public-meeting-food-and-drug-administrations-communications-about-safety-medical-devices-04012020

New Funding Opportunity Focused on SCI

DARPA (Defense Advanced Research Projects Agency in the USA) has announced a new funding opportunity focused on spinal cord injury – Bridging the Gap Plus.  In a nutshell, this competitive program is focused on developing new interventions that bridge acute injury, regeneration, and chronic functional restoration.

That’s a lofty goal considering that our field is littered with past failures of these individual strategies.  Some things are a little different with this program however.

  • It is heavily engineering oriented.  Each proposal has to build 2 implantable devices – one around reducing the effects of acute injury and one around restoring multiple functions in the chronic setting.
  • The proposed interventions are required to fit in the FDA regulatory pathway and investigators must engage with the FDA early.  It is expected that a person with SCI will be implanted by the 5th year of each project under FDA oversight.
  • They are interested in the SCI consumer perspective.  Barry Munro, NASCIC Treasurer, was invited to speak at the Proposer’s Day meeting on November 5th.  The audience was 130+ people considering submitting proposals.  Barry told them about the value of considering the end user at the beginning.  Including lived experience on the research team only strengthens the end result.  He also told them that NASCIC is here to partner with them to enhance their proposals.

Full proposals are due by January 22, 2020.  We will keep you posted on NASCIC’s involvement and which proposals end up being funded.

Patron members sought for project engagement

NASCIC receives several projects requesting input or involvement from people living with SCI or their caregivers and family. If you are interested in participating in these projects, please complete this form. As we receive approved project requests, we will contact you with these opportunities. Thank you for your participation in our SCI community.

SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research

Many throughout our community have heard about the upcoming meeting “SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research” being hosted by the National Institutes of Health (NIH) February 12-13, 2019.  The Executive Council of NASCIC has been invited to speak in one session of this meeting.

At this meeting, we are trying to represent the SCI community to the research field as people living with SCI (and family/caregivers), as well as our respective organizations. To inform our session we sought input through a survey and we will relay the summary responses of the 1800 people who informed us of their opinions through that survey.  Another venue is to support the open letter endParalysis has posted to the NIH conference organizers.  Our overarching common goal is that we all want the results of research to truly improve our lives now.

We encourage people to reach out to the contacts at NIH/NINDS who are listed at this link: https://meetings.ninds.nih.gov/Home/Contact/21041 to share your opinions.

We also encourage people to attend the live streaming and archived video of the meeting that will be available at: https://videocast.nih.gov/

NASCIC will be creating a summary report of the meeting, the survey results, and suggestions of next steps for the future.  We welcome feedback from our members.  Look for this in March.

Opportunity to Provide Input on SCI Research Funding

We have some great news! The NASCIC Executive Council have been asked by the National Institutes of Health (NIH) to provide input from our spinal cord injured community to help chart the future of funding for spinal cord injury (SCI) research in the next decade.

We ask that if you have an SCI or are a family member or caregiver of someone with an SCI that you take the time to fill out our survey – https://www.surveymonkey.com/r/SCI2020

This is a great opportunity for all of us to have a voice!

We want to hear from individuals with spinal cord injury!

Nerve Stimulation for Neurogenic Bladder and Bowel Dysfunction Survey

Who we are: We are a group of individuals from clinical, research, industry, and SCI advocacy organizations who have designed a survey that we believe is of high importance to the SCI community.

We need your help: We are conducting a survey and the purpose is to provide individuals with spinal cord injury (SCI) with a voice to help the research community understand your needs and priorities for managing your bladder and bowel functions.

Why this survey matters: Your feedback will be used to directly affect research and development priorities for improving bladder and bowel care for people living with SCI.

As a person living with SCI, your input is critical to finding real solutions to bladder and bowel management issues that you face on a daily basis. We want to understand your needs and priorities for improving your bladder and bowel functions, and understand your opinions about using nerve stimulation technologies to achieve these goals.

This survey will take approximately 20 minutes to complete. Please follow the link below to complete the survey and enter for a chance to win a $50 Amazon gift card!

Click here to take the survey!