It is times like these, when we're isolated and fearful, that call on us to be more united than ever. Lupus doesn't stop because the world does, so we won't stop fighting either. Things are changing rapidly, but that has only pushed us to adapt to fulfill our mission. Please continue to reach out if you need any help navigating life with lupus—whether it's about coronavirus or not. Many of our services are going digital, so don't hesitate to contact us if you need assistance accessing them. No matter the circumstance, there is a team of people behind every program, email, phone call, and social media post, and we are still dedicated to the mission:
To improve the lives of all people living with lupus.
Updated 9/24/2020 2:27 p.m.
The use of hydroxychloroquine (HCQ/Plaquenil) as a COVID-19 treatment is back in the news. Join Dr. David Batt of IU Health Physicians Rheumatology as he provides an overview and answers your questions as they relate to HCQ and lupus.Watch Now
The Ohio Board of Pharmacy banned the use of HCQ in the treatment of COVID-19 but then reversed the ban.
Ohio's statewide mask order went into effect on July 23, 2020. Learn more about the mandate, travel warning, and other COVId-19 updates.
The FDA has revoked the Emergency Use Authorization for chloroquine and hydroxychloroquine for the treatment and prevention of COVID-19.
Stay Safe Ohio order is lifted and replaced with "Ohioans Protecting Ohioans", which contains strong recommendations rather than orders.
Initial findings from the Global Rheumatology Alliance COVID-19 registry show that 17% of reported cases in its study are people with lupus.
The demand for hydroxychloroquine and chloroquine in response to COVID-19 has caused a shortage in Northeast Ohio. Watch the Channel 5 News interview with LFA, GOC President & CEO, Suzanne Tierney.
Worried about filling your next Plaquenil prescription? Here are some tips for refilling prescriptions for hydroxychloroquine and chloroquine
Since the announcement of hydroxychloroquine as a potential treatment for COVID-19, there have been unfounded claims about lupus patients' immunity from coronavirus. Here's what we know.
Q&A #1 - Answering your FAQ about lupus and coronavirus. Recorded March 20, 2020.
Q&A #2 - The impact of coronavirus on people with lupus. Recorded March 28, 2020.
Q&A #3 - Hydroxychloroquine (Plaquenil) and chloroquine (Aralen) shortages and how LFA is working to fix them. Recorded April 2, 2020.
Q&A #4 - How different states are taking action to ensure HCQ & chloroquine access. Recorded April 9, 2020.
Q&A #5 - Updates on the impact of coronavirus on people with lupus. Recorded April 15, 2020.
Researchers suggest that maintaining disease remission in people with lupus is crucial right now, as unnecessary hospital trips can increase the risk of COVID-19. Learn More
This patient experience survey is being used to study people with rheumatic diseases and their experience during the COVID-19 pandemic (whether they've had COVID-19 or not).
We encourage you to use the hashtags #WithoutMyHCQ and #WithoutTheirHCQ on social media to raise awareness of hydroxychloroquine and chloroquine shortages and hoarding.
Register online to vote - The next elections you can vote in are the August 4, 2020 Special Election (registration deadline: July 6, 2020) and the November 3, 2020 General Election (registration deadline: October 5, 2020).
Request an absentee ballot - You can fill out, print, and mail the request form. If you don't have access to a printer, the state has guidelines for making a handwritten request. Mail your request, then you'll receive a ballot in the mail. Complete the ballot and return it to your county's Board of Elections by mail or in-person.
The deadline to request an absentee ballot is three days before the election in which you want to vote. Your ballot must be received by your board of elections by 7:30 p.m. on Election Day OR be postmarked by the day before Election Day.
- People with lupus are at higher risk for infections like the coronavirus, also known as COVID-19. Some people with lupus may also be at risk for more serious complications from catching the coronavirus. We know the information is changing rapidly and we encourage everyone to visit lupus.org/coronavirus for the latest information on how it impacts people with lupus.
- We want doctors to be able to prescribe hydroxychloroquine to those battling the coronavirus if it does turn out to be a viable treatment. We also just want to ensure that people with lupus and other patients who rely on these medications every day will still have access to them, and be able to get their prescriptions filled.
- The Lupus Foundation of America is actively working to address these challenges, we have received positive responses from federal and state officials and other key stakeholders, including the manufacturers of hydroxychloroquine and chloroquine, state boards of pharmacy, health plans, pharmacies and pharmacists, and physicians – all of who can play a role in helping to ensure people with lupus have access to the medications they need.
- If people are having issues getting their medications filled one of the best things can do is be proactive—call around to different pharmacies; try to get their prescription filled before it needs to be filled; try mail order pharmacies, and of course talk to their doctor about what they would recommend.
- A majority of patients will take Plaquenil as part of their treatment plan and some of them are on it for the rest of their lives. Plaquenil is a cornerstone treatment for people with lupus. Studies have shown lupus patients on anti-malarials live longer that those who aren’t, and its use improves lupus symptoms and also may prevent lupus spreading to and damaging other organs, like the kidneys
The American Cancer Society is hosting afood drive, COVID-19 testing, and other community resources for East Cleveland
CareSource is providing trips to pick up food for Ohio Medicaid and MyCare members
Cleveland City Council Visit neorenthelp.org for rent assistance.
Cleveland Water and Cleveland Public Power (CPP) have temporarily stopped disconnection of residential services for non-payment. If you have recently been disconnected for non-payment, please call Cleveland Water at 216-664-3130 or CPP at 216-664-4600.
Cuyahoga County has suspended work activity requirements for people who receive food stamps and federal cash assistance. All county assessments and on-site visits related to work requirements for the Supplemental Nutrition Assistance Program (SNAP) and Temporary Assistance for Needy Families (TANF) are suspended until further notice. For more information about work requirements, a voice mail message can be left at 216-987-8656 for TANF, and 216-987-6820 for SNAP.
The Greater Cleveland RTA has guaranteed two weeks paid leave to employees who are quarantined or isolated due to coronavirus.
HFLA of Northeast Ohio is offering emergency, interest-free loans to people affected by the coronavirus. Loans of up to $1,500 are available for purposes including, but not limited to, lost wages, childcare costs due to school closures, and medical costs. Learn more and apply here, or call 216-378-9042.
The Ohio Development Services Agency Ohio qualifies for the U.S. Small Business Administration’s (SBA) Economic Injury Disaster Loan Program. This program provides low-interest loans up to $2 million in order to help businesses overcome the temporary loss of revenue during the state of emergency. Nonprofit organizations in Ohio will also be eligible for low-interest loans through the SBA’s Economic Injury Disaster Loan program. In order to complete the state’s application, businesses impacted by the current public health crisis should immediately send their contact information to BusinessHelp@Development.Ohio.gov. Additional information is available at SBA.gov/Disaster.
The State of Ohio has extended unemployment benefits to workers in quarantine and employees of businesses that temporarily shut down due to coronavirus. Learn more here.
Chardon Local Schools will be offering meal services and other resources for families during the school closure. Please visit their Facebook page for the latest.
Cleveland Metropolitan School District is offering free meals for all children in the city of Cleveland ages 18 and younger as well as shuttle service to and from the 22 meal pickup sites. Schools will also provide instructional material for students to use during their time off. Learn more here.
Geauga County Department on Aging will continue its home delivered meals program and will be offering Congregate Meals "to-go" at each of its senior center locations. Learn more here.
The Geauga County Hunger Task Force supports independent food pantries and other resources for area residents in need. Call 440-285-2261 or visit their website here.
Greater Cleveland Food Bank works with partners across the community to deliver and distribute food to residents in need. Access food programs here, or call 216-738-2067.
The Lunch Box, Painesville City Local Schools' mobile food service program, will distribute pre-bagged lunch and breakfast meals to all children under 18 while schools are closed. Please visit their Facebook page for more information.
United Way of Lake County offers a listing of area food pantries by city. You can find more information here.
The U.S. Census Bureau is monitoring the coronavirus situation and modifying its operations accordingly. Completing the census form online is highly encouraged. You can learn more here.
Vote by mail: Following the suspension of the March 17 primary election due to the current public health emergency, you may request an application from your county board of elections to vote by mail:
Cleveland Public Library and Cuyahoga County Public Library are offering free WiFi access in their parking lots and plan to expand online offerings including audio and video content for streaming. Cleveland Public Library has created a list of resources to keep children engaged in learning while schools are closed.
Lifeline Lake County is working with partners to address community needs related to the COVID-19 pandemic. For information about local resources and changes to agency services, you can dial 2-1-1 or visit their website here.
Neighborhood Connections is exploring ways to combat social isolation while following social distancing protocols. Visit their website and sign up for their e-newsletter for updates.
Northeast Ohio Coalition for the Homeless has launched an emergency fund to help the homeless and other vulnerable populations during the COVID-19 crisis. Learn more here.
United Way of Greater Cleveland 2-1-1 Help Link is available 24/7 to help those with questions about the coronavirus and to provide access to support services and programs. Se habla español.
Learn more about COVID-19 directly from the state government on the Ohio Department of Health coronavirus page.
The Toledo Northwestern Ohio Food Bank is providing free food boxes at various locations.Learn More
Columbus City Schools and various organizations in the Columbus area are providing food assistance. Learn more.
Emergency Rules Expand Access to Behavioral Health Services Using Telehealth - Ohio has relaxed regulations so that more people can be served safely in their homes rather than needing to travel to addiction and mental health treatment centers.
ODI Bulletin 2020-07: Property And Casualty, Life, And Long Term Care Insurance Premium Payments During State Of Emergency Insurers must provide their insureds with at least a 60-day grace period to pay insurance premiums or submit information. Insurers must also provide at least a 60-day grace period as to any policy provision that imposes a time limit on an insured or claimant to perform any act, including the submission of information or funds, with respect to a contract for insurance. This means Insurers are to extend such time limits by at least 60 calendar days from the last day allowed under the terms of the contract, or any longer period that may be deemed reasonable under the specific circumstances related to that insured or claimant.
Bulletin 2020-05: COVID-19 testing and treatment out-of-network coverage must be covered without pre-authorization and must be covered at the same cost sharing level as if provided in-network.
Bulletin 2020-02: Access to Coverage for Ohioans Impacted by the COVID-19 Virus Ohio insurance law protects policyholders covered by a policy of insurance issued by a Health Insuring Corporation (HIC) from balance bills in certain emergency out-of-network situations. The law requires that coverage for those specific emergency health services include indemnity payments or service agreements for out-of-area coverage. The Ohio Department of Insurance’s Consumer Services Division is available to assist consumers and can be reached at 1-800-686-1526. Frequently Asked Questions
Instacart allows you to grocery shop from home and have your order delivered in as little as an hour.
PillPack allows you to order medications in organized packs and get automatic refills. The service is free, you only pay your copay and for non-prescription medicines.
Teladoc - This service allows you to talk to a doctor, therapist, or medical expert anywhere you are by phone or video. Cost depends on your health plan and can range from $0 to $229, depending on the service. Download the Teladoc app in the App Store or Google Play Store. You can also call 1-800-Teladoc to get started.
BetterHelp - Online counseling via messaging and video chats
All of our support groups will be held as call-in meetings while we're unable to host in-person gatherings. Check the LFA, GOC calendar for support group times and information. If you regularly attend a support group, we will email you with call-in information. If you have not participated before but are interested, please contact 1(888) NO-LUPUS.
The never-ending news cycle and social distancing can be difficult to cope with, but remember that the same technology that can cause worry can also connect us with loved ones, reliable information, and vital resources.
Together at Home - A virtual concert series hosted by Global Citizen, with musicians ranging from John Legend to Hozier.
Free Classical Concerts - This list of free virtual orchestra concerts ranges from the New York Philharmonic to the London Symphony Orchestra.
Tiny Desk Concerts - Check out NPR's playlists of their best Tiny Desk Concerts. Whether you're into pop, hip hop, folk, or rock— NPR has something for everyone.
Ohio Museums with Virtual Programs - From the Rock & Roll Hall of Fame to COSI, there are so many virtual museum programs for the whole family to explore.
Virtual Museums Around the World - Yes, you can see the Guggenheim in your pajamas and not be judged. Check out this list of famous museums around the world offering virtual tours.
Likewise - Discover new books, movies, tv shows, podcasts, and more, all based on your current favorites. The app lets you track those new favorites and connect with other fans. Download in the App Store or the Google Play Store.
Reelgood - Does it feel like you've watched everything? This website randomly picks a movie or TV show to watch based on genre, ratings, and streaming platform.
*Most local libraries have e-books and audiobooks on their websites that you can check out too!
Audible - Sign up for a 30-day trial and you can pick an audiobook to read for free. Even if you cancel, you get to keep the book.
Goodreads - Find new books to read, write reviews of your favorites (and not-so-favorites), and keep track of your reading progress.