According to the Centers for Disease Control and Prevention (CDC), older adults and people who have severe chronic medical conditions like heart, lung, or kidney disease are at higher risk of serious illness from COVID-19. Hydroxychloroquine, an antimalarial treatment approved for use to treat lupus and rheumatoid arthritis, has been the focus of widespread questions regarding its potential use as a treatment for COVID-19. Several clinical trials have been started to explore the drug’s potential, but the evidence that these medications are effective and safe for the treatment of COVID-19 is inconclusive. 

UPDATE: The National Institute of Health has  recommended against the use of hydroxychloroquine and azithromycin because the combination is associated with abnormalities in heart rhythm or sudden cardiac death.

In the meantime, conflicting information poses a serious risk to older adults who may be wondering if they should take hydroxychloroquine to prevent or treat COVID-19. The increased demand for the hydroxychloroquine has created a nationwide shortage, leaving people with lupus and other autoimmune diseases struggling to find treatments they need.

This aspect of the problem is personal to my family. My 28 year-old sister was diagnosed with Lupus SLE (“Systemic Lupus”) in May 2018, and since the COVID-19 outbreak she, along with 1.5 million in the U.S. living with Lupus, has paid attention to the CDC guidelines on social distancing recommended for older adults and people of any age who have a serious underlying medical condition. I worry how she will access the life-saving medications that she needs. I sat down with NCOA’s Kathleen Cameron, a pharmacist and Senior Director of our Center for Healthy Aging, and Stevan W. Gibson, President and CEO of the Lupus Foundation of America for an objective look at the dangers of hydroxychloroquine misuse for older adults, and the shortages of medication as a byproduct of inaccurate information.

AWA: What advice would you give to older adults who are asking to be prescribed hydroxychloroquine because of what they may have heard on the news?

Kathy (K): Medications must be appropriate, effective, and safe for individual needs and the benefits must always outweigh the risks. Hydroxychloroquine poses many risks for older adults, especially those with heart disease as it can cause irregular heartbeats and other serious heart problems.

AWA: What other concerns do you have about hydroxychloroquine and older adults?

K: People with COVID-19 usually take many medications, and those medications may interact with each other and create further problems. Also, people with COVID-19 may be more susceptible to side effects from medications. Until large scale studies are completed, we don’t know much about how to safely prescribe this medication for people with COVID-19.

AWA: What should older adults do if they have questions on not only this treatment, but generally what they should do if they are thinking about taking a new medication right now?

K: It is critically important that older adults not change any of their medications, including starting new a medication, without first talking with their doctor or pharmacist. For those with COVID-19, current medical treatment includes infection prevention and control measures and supportive care, such supplemental oxygen and ventilator support when indicated. AWA recommends its Guide to Discussing COVID-19 with Healthcare Providers.

AWA: Any other advice for older adults?

K: Older adults and people who have underlying medical conditions like heart or lung disease or diabetes are at higher risk for developing serious complications from COVID-19 illness. Therefore, throughout the pandemic, it is critically important that everyone and especially older adults and those with chronic illness adhere to the guidelines that CDC has developed. Stay active and as connected with family members, friends and neighbors during this challenging time. If you have an underlying chronic condition like diabetes or heart disease, stick to the guidance that your doctor has provided in managing your disease, including taking your medications.

The Lupus Foundation of America (LFA) continues to reach out to key stakeholders, including state and federal government, state boards of pharmacy, drug manufacturers and other stakeholders to make sure that millions have access to the medications they need.

AWA: Are hydroxychloroquine (HCQ) and chloroquine (CQ), two medications used widely by people with lupus, currently being investigated as potential treatments for the coronavirus (COVID-19)?

Steve (S): Various researchers around the world are studying whether hydroxychloroquine and chloroquine are effective treatment options for the coronavirus. There are several formal clinical trials for the two drugs usage for the treatment of COVID-19 being conducted in the United States. The results of those trials are not yet known. A complete list of clinical trials studying COVID-19 and hydroxychloroquine can be found at clinicaltrials.gov.

AWA: What are the risks and challenges for people with lupus due to the increased demand for hydroxychloroquine?

S: The increasing demand for hydroxychloroquine has caused a shortage of the drug, making it more difficult for people with lupus to fill their prescriptions. Hydroxychloroquine is used to manage lupus flares and unfortunately, there are few good alternative medications for people who cannot fill their hydroxychloroquine prescriptions. Without an effective alternative, this shortage puts people with lupus at risk of experiencing increased flares and flare intensity, which could jeopardize their health and have a potentially life-threatening impact.

Hydroxychloroquine is also a longer-acting medication that can take several months to build up in the body and become effective. That means that if people have to stop taking it for a short period they may still have some protection from disease activity. But it also means that if the regular dosage is stopped and eventually restarted, it will require an extended period of time for it to be effective again, which can substantially disrupt treatment for people living with lupus. Hydroxychloroquine is most safe and effective at its prescribed dosage.

AWA: What steps has the Lupus Foundation of America taken to help support those with lupus?

S: The Lupus Foundation of America has maintained fierce advocacy work on behalf of those living with lupus during the coronavirus pandemic. This includes:

• Joining with the American College of Rheumatology, American Academy of Dermatology, and the Arthritis Foundation to issue a joint statement urging the White House Coronavirus Task Force, the congressional leadership, and U.S. governors to ensure hydroxychloroquine access.
• Urging manufacturers of hydroxychloroquine and chloroquine to ensure supply to treat lupus.
• Urging state pharmacy boards to ensure availability of hydroxychloroquine and chloroquine.
• Launching a letter-writing campaign to Congress to make sure they hear about the importance of keeping hydroxychloroquine available to people with lupus. As of April 17, over 150,000 letters have been sent.
• Launching an advocacy campaign asking representatives to sign onto a letter that urges them to ensure access to hydroxychloroquine and chloroquine for people with lupus and rheumatoid arthritis.

The LFA has also compiled a number of resources, including answers to frequently-asked questions about the coronavirus and lupus, tips on refilling your hydroxychloroquine prescriptions, and advice on what to do if you are experiencing coronavirus symptoms, on lupus.org for easy and quick access. For older adults and for young adults like my sister, the worry caused by unverified information can exacerbate existing uncertainty brought on by COVID-19.

NCOA and the Lupus Foundation of America understand that we are all in this together. The situation is changing rapidly, and we encourage you to visit agewellamerica.org and lupus.org for the latest up-to-date information.