We know that these are unprecedented times in our state and in our county. However, in these unsettling times, we want to remind you of the importance of turning to trusted and reliable sources for accurate information regarding bleeding disorders and COVID-19, such as the National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA) and the Hemophilia Council of California (HCC).
While the HCC office is closed, our staff is working remotely and remains actively engaged in monitoring the health care access needs of the bleeding disorders community in California. In particular, to the degree possible, we want to ensure that no one’s access to treatment is compromised during this health care crisis. Therefore, if you or a bleeding disorders patient you know experiences any type of access issue which you cannot resolve–either due to changes of employment, loss of insurance, denial of coverage, or some other barrier to treatment and the patient lives in California, please contact us at healthaccess@hemophiliaca.org.
As with so many other organizations, the COVID-19 outbreak has impacted our schedule of events. In response to the need to limit the transmission of COVID-19, HCC is re-imagining the structure of Future Leaders and Legislative Day. We will not be meeting in Sacramento on May 3-5th; instead we hope you will join us by participating in our re-imagined VIRTUAL Future Leaders and Legislative Day events. In times like these, the voice of the bleeding disorders community- individuals, families and allies- remains as needed as ever at the State Capitol. Please help us to inform our legislators about bleeding disorders and the issues facing our community—not only right now, but every day. More information will be forthcoming, so don’t miss a beat—sign up for our updates list and stay current on the latest information about these key advocacy opportunities for the bleeding disorders community in California.
BLEEDING DISORDERS & COVID-19
In examining information from respected sources, in particular NHF’s Medical and Scientific Advisory Committee (MASAC), there is no indication that people with bleeding disorders are at an increased risk for contracting COVID-19, and there is no indication that people with bleeding disorders who are not immunocompromised and have no other underlying conditions are more likely to develop severe symptoms. However, the COVID-19 virus is a respiratory illness that may result in severe coughing, which may increase the risk of throat, neck and/or head bleeds. It is more important than ever to make sure you are adhering to your prophylaxis regimen to decrease the likelihood of bleeding. i.
And what about the factor supply? Our pharmaceutical partners have assured both NHF and HFA that their supply of medication is unaffected by the outbreak. Treat as directed by your healthcare provider, and contact your HTC or healthcare provider with any questions or concerns.
TRUSTED SOURCES OF INFORMATION
The National Hemophilia Foundation (NHF)–Dr. Leonard Valentino is the new CEO of the National Hemophilia Foundation. As a doctor and a researcher, he is committed to the health of the bleeding disorders community–each week NHF has committed to send out updates and respond to questions. These updates will also be posted at www.hemophilia.org. You can email questions to communications@hemophilia.org and he will try to address those questions in upcoming communications.
The Hemophilia Federation of America (HFA) – has also set up a resource page with helpful information regarding COVID-19. Among other helpful resources is information regarding how to handle your insurance needs should you be laid off from your job.
And here in California, your local bleeding disorders foundations are working hard on your behalf and stand ready to help:
Central California Hemophilia Foundation (https://www.cchfsac.org/)
Hemophilia Association of San Diego County (https://hasdc.org/)
Hemophilia Foundation of Northern California (https://www.hemofoundation.org/)
Hemophilia Foundation of Southern California (https://hemosocal.com/)
As always, your hemophilia treatment center or your own provider should be your first call regarding any personal treatment concerns or decisions.
Hemophilia Treatment Centers Directory (California)
CALIFORNIA RESOUCES
COVID-19—For the most up-to-date information regarding COVID-19 and the statewide response, please refer to: https://www.covid19.ca.gov/ From this page, you can also reference your local county health page, which will give you the most reliable local information for your community.
Employment—The State of California has a number of benefits and protections available to workers impacted by COVID-19. Please check this chart, and if your hours are reduced you can file for unemployment here: https://www.edd.ca.gov/Unemployment/Filing_a_Claim.htm.
Insurance–If you don’t have health care coverage or recently lost your coverage and reside in California, review this resource for more information about programs which you may be eligible: Coverage Options Fact Sheet
Covered California reports that consumers can easily find out if they are eligible Medi-Cal or other forms of financial help and see which plans are available in their area by using the CoveredCA.Com Shop and Compare Tool and entering their ZIP code, household income and the ages of those who need coverage. Both Covered California and MediCal have extended their open enrollment period to June 30th. Those interested in learning more about their coverage options can also:
- Visit www.CoveredCA.com.
- Get free and confidential assistance over the phone, in a variety of languages, from a certified enroller.
- Have a certified enroller call them and help them for free.
- Call Covered California at (800) 300-1506.
In addition, if you have a bleeding disorder, you may qualify for coverage under California Children’s Services (CCS) or Genetically Handicapped Persons Program (GHPP).
A child may qualify for CCS if he or she:
- Is under the age of 21;
- has a health condition that is covered by CCS (includes hemophilia and von Willebrand Disease);
- is a California resident;
- and has one of the following:
- annual family income less than $40,000
- out-of-pocket medical expenses greater than 20 percent of annual household adjusted gross income
- need for an evaluation to find out if a health problem is covered by CCS
- adopted with a known health problem that is covered by CCS
- has a need for the Medical Therapy Program
- is on Medi-Cal with full benefits
An adult may qualify for GHPP if he or she:
- is 21 years old or older;
- has a health condition covered by GHPP, including hemophilia and other genetic bleeding disorders;
- is a California resident;
- There is no income limit for GHPP. However, GHPP clients may be required to pay an annual enrollment fee. The amount of the enrollment fee is based on your adjusted gross income.
During this time of “social distancing” we encourage you to follow public health guidelines but find new ways to remain connected. Use technology to connect with friends, family and community members. Watch for new webinar and other online connection and educational opportunities from HCC and the other organizations we’ve referenced. And take care of each other.
Warmly,
LYNNE KINST
Executive Director
Hemophilia Council of California
i. https://www.hemophilia.org/Newsroom/NHF-Community-News/Health-and-Wellness-Update-from-Dr-Valentino
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