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COVID-19 RESOURCES

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STATEMENTS AND UPDATES

During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFA will continue to publish updates and information about COVID-19 and its effects on the bleeding disorders community.

MEDICAL NEWS
Updates on medical information and statements affecting patients:

INDUSTRY NEWS & PRODUCT AVAILABILITY
Updates on how COVID-19 is impacting companies and the products they produce to treat bleeding disorders:

NATIONAL, GOVERNMENT AND LOCAL NEWS
Updates on operations and services of organizations serving the bleeding disorders community:


RESOURCES

FAQ: BLEEDING DISORDERS AND COVID-19

HFA has created a Frequently Asked Questions site to answer some questions we have heard from community members.

Visit FAQ Webpage

PATIENT CARE AND PRODUCT AVAILABILITY CONCERNS

We have heard concerns within the bleeding disorders community about access to care and the availability of products and services during the ongoing coronavirus emergency. We hear your concerns! Please know that we are meeting with pharmaceutical companies, specialty pharmacies and HTC providers to discuss how to maintain uninterrupted access to care, and we will let you know what we learn. In the meantime, we want to hear from you if you have any issues accessing your products or care, via the Patient Voice inbox. We commit to continue to provide you with as much information on as timely a basis as possible.

CONTACT PATIENT VOICE

INSURANCE COVERAGE CONCERNS AND UNANSWERED QUESTIONS

As a community, we know how important it is for people with bleeding disorders to maintain comprehensive health insurance. Amid the uncertainty of the ongoing coronavirus emergency, we want to remind you that insurance options exist even for those who may be facing job or other economic impacts.

    • You may be eligible for Medicaid if you meet the income eligibility criteria based on your current monthly income, and if you live in one of the 37 states that have expanded their Medicaid programs to cover all low-income adults.
    • Open enrollment is available for Medicaid and for CHIP year-round, for individuals and families who meet their state’s age, income, and other eligibility criteria.
    • If you had health insurance through your job, or a family member’s job, and you lose that insurance (e.g. through unemployment, a job change, loss of hours, etc.), you may become eligible for a special enrollment period: an opportunity to buy health insurance through healthcare.gov.
    • If you purchase a new insurance plan on the individual market, stay away from skimpy options (e.g., short-term health plans, Farm Bureau, or health sharing ministry plans) that do not meet ACA consumer protection standards and will not provide adequate coverage for your bleeding disorder.

 

For additional coverage options for those without job-based coverage, download these handouts:

Your national organizations are here to help. Please contact us if you have questions about how to navigate coverage issues.

Contact Us

FRAUDALERT

Moments when the community is scared and vulnerable can be times when scammers may come out in full force. Follow these tips to protecting yourself from fraud during COVID-19.

Watch our short video on protecting yourself from fraud:

MENTAL WELLNESS

Below are resources for the bleeding disorders community to connect about mental health and wellness:

  • Weathering the Storm by Headspace Mobile App
  • HFA’s Mental Health Handout
  • If you are currently in crisis:
    • Text “Home” to 741741 to reach the Crisis Text Line
    • Call (800) 273-8255 for the National Suicide Prevention Lifeline. Prevención del suicidio en Español: (888) 628-9454
    • Call (800) 662-HELP for a referral to local treatment facilities, support groups, and community organizations for mental health and substance use disorders (Español disponible)
  • HFA’s Crisis Hotline ‘Print and Save’ Resource

FINANCIAL ASSISTANCE

URGENT HOUSEHOLD BILLS

As COVID-19 threatens the livelihood of families in the bleeding disorders community, HFA has responded by creating an HFA COVID-19 Relief Fund as a restricted fund within the Helping Hands program. We are providing rapid financial relief for bleeding disorders families who are facing a significant loss of income due to COVID-19 and are unable to pay an essential household bill. Referrals can be made by a health care professional, social worker, bleeding disorder organization rep, or pharmacy/homecare rep.

LEARN ABOUT COVID-19 RELIEF FUND

HFA Helping Hands continues to serve our community through Emergency Assistance, Items Assistance, and Inhibitor Support programs. The eligibility requirements and process to apply for those programs can be found on our website. If we receive requests for needs which do not fall within the scope of our program, we will direct inquirers to appropriate alternative resources including those below and on our Patient Assistance Portal.

VISIT PATIENT ASSISTANCE PORTAL

Other Urgent Household Bills Resources:

  • The Patient Assistance Network Foundation launched a new COVID-19 Treatment and Prevention Fund to provide $300 of direct financial relief to qualifying Medicare beneficiaries with cancer, chronic or rare diseases who have also been diagnosed with COVID-19 or asked to self-quarantine by their healthcare provider or a government agency. See if you qualify for the PAN Foundation COVID-19 Treatment and Prevention Fund here.
  • National Organization of Rare Disease’s COVID-19 Rare Disease Critical Needs Non-Medical Assistance Fund
    • Helps rare disease patients with up to $1000 financial assistance for utilities, phone, cell phone, internet; emergency repairs to car, furnace, home or major appliances; assistance with travel and/or lodging logistics and expenses; rent or mortgage; or support for adaptive learning during school closures.
    • Patients must have a confirmed rare disease diagnosis
    • US citizens or provide documentation of permanent US residency status; or resident of the United States for at least six months.
    • Applicants must meet financial eligibility criteria (at or below 400% of the Federal Poverty Level guidelines (FPL) or demonstrate financial impact/mitigating circumstances due to the COVID-19 pandemic

    Call (203) 242.0497 or email covid19assistance@rarediseases.org with your full name, phone number and rare disease diagnosis. Espanol available.

  • The March 2020 CARES Act temporarily halts evictions for some people who live in rented homes, and provides federal funding for some rental assistance. Some states have also acted to suspend renter evictions. If you are experiencing difficulty in paying your rent due to the COVID-19 emergency, you are encouraged to reach out to your landlord to discuss your circumstances.
  • 211.org Service by United Way: Call 2-1-1 or visit www.211.org to find local agencies who can help with food, bills and other needs.
  • AuntBertha.org: Visit www.auntbertha.org and enter your ZIP code to browse a list of services and programs.
  • HFA’s Patient Assistance Portal
  • See coronavirus news and guidance from the Food and Nutrition Service from the U.S. Government
  • The March 2020 CARES Act suspends time limits on federal food assistance (“SNAP”) for unemployed childless adults between the ages of 18 and 49, and allows states to suspend work requirements imposed on SNAP beneficiaries.

FOOD/NUTRITIONAL NEEDS

GOVERNMENT BENEFITS

UNEMPLOYMENT

  • Unemployment Insurance is administered jointly by the U.S. Department of Labor and individual states. In March 2020 new federal law greatly expanded unemployment insurance benefits to include self-employed and gig workers and to provide an extra $600 per week and additional 13 weeks of benefits above what your state mandates.
  • For the most recent updates about federal unemployment benefits and how to apply for  benefits see this webpage from the U.S. Department of Labor.
  • For guidance on workplace safety, wages, and leave, see the Department of Labor Coronavirus page.

CASH ASSISTANCE

  • Depending on your income level, you may receive an automatic direct cash payment from the federal government of up to $1,200 per individual, $2,400 per couple, and $500 per child under the age of 17. The government expects to begin sending out payments in April.
  • You do not need to apply to receive a payment though you may need to have filed a 2018 or 2019 tax return.
  • Advice from the Chair of the Senate Finance Committee: “The best way to ensure you receive a recovery rebate is to file a 2019 tax return if you have not already done so. This could be accomplished for free online from home using the IRS Free file program.”

MEDICAL/INSURANCE NEEDS

NORD’s COVID-19 Rare Disease Premium and Medical Assistance ProgramCall (203) 242.0497 or email covid19assistance@rarediseases.org with your full name, phone number and rare disease diagnosis. Espanol available. Provides financial assistance for certain out-of-pocket costs associated with patient’s health insurance premiums and/or provides eligible uninsured and under-insured patients with financial support for out-of-pocket medical expenses limited to:

  • Medical visits and telehealth consults
  • Laboratory and diagnostic testing
  • Physical and/or occupational therapy and/or other physician prescribed therapy
  • Durable medical equipment
  • Medical supplies (tube feeding supplies, dressing kits, personal protective equipment)

FAMILY/PARENT/EDUCATION RESOURCES

ADDRESSING FAMILY NEEDS

INFORMATION AND EDUCATIONAL RESOURCES FOR PARENTS

NATIONAL, GOVERNMENT AND OTHER PATIENT LINKS


OTHER INFORMATION

WHAT WE KNOW

Terminology: The novel virus has been named “SARS-CoV-2” and the disease it causes has been named coronavirus disease 2019 or “COVID-19.” We recommend The New York Times’ article on this topic, which provides an overview about what we know about the virus and COVID-19. Let science, data, government agencies, and credible news sources be your resources during this time. Inflammatory posts on social media will only worry you more. Stay calm and educate yourself.

WHAT CAN YOU DO NOW?

Everyone should take the following routine precautions to safeguard themselves from all germs and viruses.

Take Precautions
  • Physical distancing, as recommended by the CDC and other health organizations.
  • Avoid contact with sick people
  • Avoid touching your eyes, nose, or mouth with unwashed hands
  • Clean your hands often by washing them with soap and water for at least 20 seconds or using an alcohol-based hand sanitizer that contains 60%–95% alcohol. Soap and water should be used if hands are visibly dirty. It is especially important to clean hands after going to the bathroom; before eating; and after coughing, sneezing or blowing your nose.
Household Preparedness

It’s important for all households to be prepared for an emergency of any kind, but even more so for someone with a bleeding disorder.  The U.S. Centers for Disease Control and Prevention have published helpful interim guidance on how to “Get your Household Ready for Coronavirus Disease 2019 (COVID-19).” Among other things, the CDC recommends creating a household plan of action; practicing good personal health habits; and planning ahead for potential temporary disruptions to school and workplace operations.

THINK YOU MAY HAVE CORONAVIRUS (COVID-19)?

Call ahead to a healthcare professional if you develop a fever1 and symptoms of respiratory illness, such as cough or difficulty breathing, and have been in close contact2 with a person known to have COVID-19 or if you live in or have recently traveled to an area with ongoing spread. Tell your healthcare professional about your recent travel or contact. Your healthcare professional will work with your state’s public health department and the CDC to determine if you need to be tested for COVID-19. The CDC’s website is the best source for information on this subject.


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