[Congressional Record Volume 169, Number 48 (Wednesday, March 15, 2023)]
[Senate]
[Pages S800-S802]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. KAINE (for himself, Mr. Markey, Ms. Duckworth, Mr. 
        Blumenthal, Ms. Smith, Mr. Padilla, Mr. Whitehouse, Ms. 
        Stabenow, Mr. Reed, Ms. Klobuchar, and Mr. King):
       S. 801. A bill to address research on, and improve access 
     to, supportive services for individuals with Long COVID; to 
     the Committee on Health, Education, Labor, and Pensions.
  Mr. KAINE. Madam President, I rise today to talk about the importance 
of March 15, which for the first time has been designated 
``International Long COVID Awareness Day.''
  This is a topic of importance to millions of Americans who deal with 
long COVID every day and tens of millions of people around the world 
who are dealing with long COVID, from mild symptoms to symptoms that 
are so debilitating that they are unable to work.
  There is still an awful lot to learn about the condition, but what we 
do know is that long COVID is comprised of ongoing health problems that 
people experience after being infected with COVID-19. For some, long 
COVID can last weeks or months. For others, like me, long COVID has now 
lasted for 3 years.
  Long COVID symptoms can vary. Some people experience general symptoms 
like fatigue, neurological symptoms like headache or difficulty 
concentrating, digestive problems, shortness of breath, heart 
palpitations, and other neurological conditions.
  The prevalence of long COVID is a best estimate, but the recent 
survey by the Census Bureau, in partnership with the National Center 
for Health Statistics, shows that about 5.8 percent of Americans have 
long COVID, and that amounts to about 11 percent of Americans who have 
had COVID who continue to experience long COVID symptoms.
  I am on my own long COVID journey. My symptoms are mild, but they 
have been continuous for 3 years. When we were working in the Capitol 
in March of 2020 at the very beginning of COVID, most of us had 
dispatched our staffs and sent them home. So I was working in my office 
together just with my chief of staff. It was kind of a lonely time, as 
those of us who were here remember, but we were working hard. We were 
working hard to pass the first COVID relief bill, the CARES Act, and we 
did good work, in a bipartisan way, to provide relief to individuals 
and our businesses and hospitals and universities and schools in those 
early days.
  I noticed one day that my nerve endings turned on like a light switch 
was flicked, and all of them started to tingle like my skin had been 
dipped in an Alka-Seltzer--24/7, every nerve ending in my body. It has 
not gone away in 3 years.
  I had a mild case of COVID. I never had respiratory problems. I never 
had fatigue. Within a few days after getting this, I was fine except 
for the nerve tingling, and I assumed because of the pollen on my car 
that it was hay fever gone wild. Other symptoms were more like allergic 
symptoms--pinkeye and skin rashes.
  That all went away, but when I went home, I gave COVID to my wife--
just one more thing for a husband to feel guilty about. She got the 
standard case of COVID, and that is what made us realize that that is 
what I had. We both had mild cases. Within a very few days, we were up 
and at `em and feeling great, but this nerve tingling sensation has 
never gone away.
  I kept waiting, thinking next week it will go away or next month it 
will go away, but after 6 months, I finally decided I should see a 
neurologist. I went

[[Page S801]]

to George Washington and did fine on neurological tests, but the 
neurologist told me: Look, viruses can have a neurological aftereffect. 
The good news is, it is probably not going to get worse. The bad news 
is, it may not get better.
  The doctor was perfectly right on both counts. It has never gotten 
worse, and it has never gotten better. It is not painful. It is not 
debilitating. I can work. I can exercise. I can focus. It is harder to 
sleep--that would be the only area where it is affecting my life. But 
it is eerie that, after 3 years, it hasn't changed.
  My wife said: Well, but then doesn't that mean you just get used to 
it and you don't notice it?
  No. It is just a little too intense. I notice it all the time, 
everywhere.
  Well, the good news is, my symptoms are mild and I can continue to 
work, but as I have shared my story, what I have found is many come and 
share their stories with me, including people here around the Capitol. 
They share their own long COVID stories, and many are very, very 
troubling: The marathon runner who can't walk around the block. I have 
a dear friend who--I am godfather to her oldest child--has a very 
physically demanding job as a dialysis nurse, which involves a lot of 
helping patients around. She got COVID, and both fatigue and balance 
issues are so challenging that she is not able to do the work.
  I had a State employee who worked in my department of transportation 
who saw me on a bike ride by his house one day in Richmond, where I 
live, and he flagged me down and stopped me. He said: Hey, look, I was 
your employee when you were Governor working with the department of 
transportation. I am a young dad. I have two boys under age 10. I want 
to be a great father for them, but I got COVID, and now my long COVID 
symptoms are so significant, I can't play baseball with them.
  He can't do the kinds of things that a dad wants to do with his 
children. This individual is now on long-term disability, unable to 
work at all.
  These are very, very serious stories.
  The public health emergency around COVID is likely to come to an end 
on May 11, but we can't forget millions of people who are dealing with 
this issue.
  Now, let me just share some statistics. Across the United States, 
adult women are more likely than men to experience long COVID. 
Individuals who identify as Hispanic or Latino experience long COVID 
more than any other racial or ethnic group. People with disabilities 
are more likely to experience long COVID than those without 
disabilities.
  Long COVID is not limited to people like me. I just turned 65. A lot 
of young people are dealing with long COVID symptoms. Their initial 
COVID presented differently than it did with most adults, but some of 
the long COVID symptoms are those I have described. Twenty-five percent 
of people who have long COVID say that their symptoms significantly 
limit their activity.
  The economic cost of long COVID disability is upward of $200 billion 
a year. Up to 4 million people are out of the American workforce right 
now because of long COVID, at a time when I know all of us are hearing 
from our employers: I can't hire people. It is so hard to hire people 
now.
  The unemployment rate is the lowest it has been since 1969. If there 
are things we could do that could help those 4 million come back into 
the workforce, it would be good not only for them, for their happiness, 
for their pocketbooks; it would be great for our economy.
  To better understand the impact of long COVID, in January, I worked 
together with the Agency for Healthcare Research and Quality to gather 
patients and providers from Virginia and State and Federal officials 
from everywhere to come to a summit in Richmond to talk about long 
COVID. The conversations that day allowed us to, nearly 3 years in, dig 
into long COVID and what are its impacts and, most importantly, what 
can we do. We were able to discuss experiences, share best practices 
and research.
  I was honored to have four Virginians with long COVID who joined me 
in discussing their own journeys.
  Cynthia talked about having unusual symptoms and not being believed 
initially that she even had COVID and then not being believed that she 
had long COVID. Her symptoms were more in the allergic reaction space, 
similar to mine. In fact, she went multiple times to emergency rooms 
because her symptoms were so intense and found that, without telling 
her, she was often being drug-tested because they assumed that she was 
there and maybe she was suffering from some kind of a drug overdose. So 
they were testing her for that and not believing her long COVID story.
  She has since found healthcare professionals who believe her and are 
offering her treatments that have not ended her long COVID symptoms but 
are enabling her to more effectively negotiate her schedule.
  Mattie from Southwest Virginia was kind of your quintessential do-
everything, 35-year-old mom of three, who also worked, who also went to 
school. She could juggle everything and make it seem easy. When she got 
COVID, she got hit with fatigue so intense she couldn't do any of those 
things, and then that spiraled into depression. She was a healthcare 
provider herself, working with seniors, and really started to question, 
What kind of purpose do I have if I can't be the mom I want to be, if I 
can't be the healthcare provider I want to be? It caused tremendous 
anxiety and depression.
  Now, Mattie's was a story of hope because she eventually found a 
physician who realized COVID had exacerbated an underlying medical 
condition called Hashimoto's disease that she had had probably since 
birth but had never really been serious enough to notice. COVID 
exacerbated it. She is being treated for Hashimoto's, and many of those 
symptoms have abated. So hers is a story of hope. This is not a 
hopelessness story. You can find paths forward. She is doing better.
  ZZ and Katy. ZZ is a middle schooler who had serious long COVID 
experiences, and Katy talked about trying to help her son and not being 
believed until they finally found their way to the Children's National 
Hospital, just up the hill from where we are.
  Finally, Rachel--a longtime human resources professional at a 
community college in Virginia--used to working with people, including 
people with disabilities, to help them either get jobs or do coursework 
at the local community college. Her long COVID experience was so 
debilitating in fatigue and migraine headaches and other problems with 
respect to focus that she eventually had to leave her job and apply for 
long-term disability and her Social Security.
  She was told when she applied that there were more than half a 
million applications before hers, and after a year, she was turned down 
with little explanation. She described the challenges of trying to 
negotiate the system and fill out forms when she is suffering from such 
fatigue and headaches and other symptoms that make even filling out a 
form difficult.
  So these four stories were a mixture of young people and adults, some 
stories that didn't yet have happy endings and at least one that did 
have a positive ending, and it was important that we understand them.
  Congress has taken some steps. I have colleagues in the room, and I 
just want to thank them for this. We provided $1.15 billion in Federal 
funding to the National Institutes of Health to advance understanding, 
prevention, and treatment. In December, Congress passed a budget that 
included $10 million for this Agency for Healthcare Research and 
Quality to do critical research. These efforts are a step in the right 
direction, but more must be done.
  Just last week, the President introduced the fiscal year 2024 budget. 
He requested additional funding for AHRQ and additional funding for the 
HSRA to do long COVID.
  Today, I am reintroducing a bill, the CARE for Long COVID Act, with 
Senators Markey and Duckworth and eight other Senators. It is also 
being introduced in a bipartisan way on the House side. The bill will 
expand research to increase understanding of treatment efficacy and 
disparities and provide more recommendations, educate long COVID 
patients and health providers, facilitate interagency cooperation, and 
develop partnerships between community-based organizations, social 
services, and others.
  But there is more work to be done, so as I conclude--I see my 
colleague from Louisiana on the floor waiting to

[[Page S802]]

speak--we just have to keep focused on this to try to address this 
challenge. When the public health emergency ends, we can't forget those 
who are dealing with long COVID, and we can't forget those who are 
dealing with the significant amount of mental anxiety and stress that 
has been present in the lives of all for the last 3 years. We have to 
improve our outreach and education, we have to accelerate our research 
to come up with treatments and cures that work, and we have to do it 
with a sense of urgency. I am committed to working with you all to do 
that.
                                 ______