Tell the White House COVID Response Coordinator to tell the truth about Long COVID!

Ashish Jha

White House COVID Response Coordinator Ashish Jha recently laid out a set of troubling, misleading and inaccurate statements minimizing the COVID-19 and Long COVID crisis – defending the Biden Administration’s ending of the COVID-19 public health emergency and other safeguards for care access.

Jha continues to minimize the risks of COVID infection as well as the numbers of people facing the effects of Long COVID. He also lies about the effect of vaccines on decreasing Long COVID rates, saying “you can reduce your risk of long COVID by 50%, 80%, 90%.”

As noted by Lisa McCorkell of Patient-Led Research Collaborative:

“Studies vary on how much protection vaccination provides on the risk of developing Long COVID, with one study indicating no difference, and others showing partial protection with a reduced risk of 15-41%. There is more definitive evidence for vaccines reducing the risk of hospitalization and death from COVID, but for Long COVID, it must be made clear that people who are vaccinated can and still frequently do develop Long COVID.”

Further, we must vigilantly defend the right to health care for many with Long COVID and associated diseases that may be dropped from Medicaid in the coming months, beginning in less than a month.

Jha and President Biden must tell the truth about the Long COVID crisis, so that people can better protect themselves and so those of us living with Long COVID and associated diseases can get the help we need. The Administration must fight for resources for our lives, rather than denying our realities.

Meanwhile, millions of Americans face losing their healthcare in the months ahead, due to the “unwinding” of continuous Medicaid coverage starting on April 1 – yet the Administration has made no statements or offered any help to people with Long COVID and associated conditions who face losing our care while we face major medical needs.

Add your name and/or organization to the petition to let Jha know that we're paying attention and won't accept his fumbling with the truth. We demand a public statement correcting his errors, and commit to what we really need to address the Long COVID crisis.



To: Ashish Jha
From: [Your Name]

You recently gave an interview to Medpage Today in which you make statements that greatly minimize the Long COVID Crisis, and which could actively hurt those trying to avoid harm or access badly-needed treatment, care, support and benefits.

In particular, we object to:

Your flippant comment de-valuing well-done studies that ask if "patients are tired," instills doubt into patients' own awareness of our bodies and casts doubt on solid research.

Your minimization of the breadth of Long COVID, saying it is made of “three or four different conditions” when we know that there are many more conditions that can individually and collectively lead to ill health, disability and even death.

You are either ill-informed or being intentionally inaccurate about the role vaccination plays in Long COVID, incorrectly asserting that “you can reduce your risk of long COVID by 50%, 80%, 90% depending on the study, by being up-to-date on your vaccines,” when studies show either no difference or no more than 15-41% protection.

Crucially, while you mention that “avoiding infection” prevents Long COVID, you make no mention of ways to actually do so. COVID-19 prevention – including high quality masks, air ventilation and filtration, testing access, and widespread, easily accessible treatment – is being dismissed, not provided or left unfunded by the Biden Administration. Earlier in the interview, you parrot rhetoric dismissing the importance of COVID prevention methods, including by immunosuppressed people and elders, as a matter of “what do you feel comfortable with.”

You state that “people who are disabled are going to get the care and the resources they need,” while we are rejected, time and again, from even the most meager disability benefits. Being approved for SSI/SSD is extremely difficult, particularly for Long COVID and other complex chronic conditions. We are required to impoverish ourselves, possibly for years, before qualifying and many never receive approval.
Meanwhile, millions of Americans face losing their healthcare in the months ahead, due to the “unwinding” of continuous Medicaid coverage starting on April 1 – yet the Administration has made no statements or offered any help to people with Long COVID and associated conditions who face losing our care while we face major medical needs.

With all the contrary evidence to many of your claims, we call on you to do the following:

Meet with representatives of patient-led groups of people with Long COVID and associated diseases to hear our realities, and learn how to work in partnership to serve our communities and needs.

Make a clear public statement correcting your errors, emphasizing all methods of COVID-19 and Long COVID prevention, committing to presumptive disability benefits starting at the time of filing of cases, and pledging federal resources to safeguard the care of all who face losing Medicaid as unwinding begins.

Sincerely,
The Undersigned