[Congressional Record Volume 165, Number 52 (Tuesday, March 26, 2019)]
[Senate]
[Pages S2000-S2008]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
AFFORDABLE CARE ACT
Ms. KLOBUCHAR. Madam President, I rise to join my colleagues in
sharing my concerns and all of our concerns that we have--and really
the concerns of a nation--about the announcement last night from a
Department of Justice that works for this administration, which
announced its plans to literally invalidate the Affordable Care Act and
strip healthcare coverage away from millions of Americans, including
those with preexisting conditions.
Before this time, it was a bit unclear, despite a court filing in
Texas, what the intentions were. Some of our colleagues were saying,
``No, we don't really want to repeal the Affordable Care Act,'' but
last night we learned the truth, and the truth was very clear. The
Justice Department took a hardline approach that they want to repeal
the Affordable Care Act.
The President tweeted today that the Republican Party ``will soon be
known as the party of health care.'' In fact, yesterday's filing--in
which the administration changed its previous position and argued in
support of affirming the decision of a district court judge in Texas--
ensures exactly the opposite; that this administration will break the
promise it made to the American people that they can have healthcare
insurance; that if they have a preexisting condition, they will not
lose their healthcare. That was what the situation was before we had
the protections in place in the Affordable Care Act, before you were
able to keep your kids on your insurance until they were 26. That was a
huge positive development.
Then we also put in place protections that said you couldn't be
kicked off your insurance for preexisting conditions. All over the last
year, we had a debate about this in this Nation. I still remember being
in a smalltown parade in Northern Minnesota, where a mom was pushing a
stroller. She brought me over and pointed to her toddler in that
stroller, to her young boy who had Down syndrome. She said: This is
what a preexisting condition looks like, and I will do everything to
protect my child. Guess what. Last night, the administration announced
they wouldn't protect that child because they will do everything to
repeal the Affordable Care Act.
Let's start with the absurd ruling the administration is basing its
actions on. The Texas ruling last December came more than 6 years after
the Supreme Court, in an opinion written by Justice Roberts, upheld the
law's constitutionality, which also found that parts of the law can be
severed from the rest of the legislation. It also came after
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the administration's refusal to defend the law. Instead of going in to
put out the fire when the house was burning down, they just stood
there. They just stood there and poured lighter fluid on, in terms of
tweets and rhetoric.
If this ruling takes effect, the consequences of just this ruling
alone from Texas will be devastating. To start, protections for people
with preexisting conditions will be gone. About half of all Americans
have preexisting conditions. This isn't just rare diseases. It is much
more common diseases, like diabetes and asthma. The ability to keep
your kid on your insurance plan until they are 26 would be gone. The
work we have done to close the Medicare doughnut hole coverage gap
would be gone. The provisions that help people buy insurance on the
healthcare exchanges would be gone.
In my State, Minnesotans would see a loss of $364 million in premium
tax credits, and roughly 272,000 people would lose their coverage. That
is one State alone.
We cannot allow this to happen. The decision from Texas should be
overturned, and we need a President who believes the same thing. It is
time to stop trying to reset the clock or start from scratch. This is
not what the American people want. The vast majority of Americans
support those protections in the Affordable Care Act.
We know we can make improvements to the Affordable Care Act. I would
like to see pharmaceutical prices go down. I would like to pass my bill
to allow Medicare to negotiate cheaper prices for prescription drugs.
We could have a vote on that. I would love to see the bill I had with
Senator McCain, and now Senator Grassley, come up for a vote that would
allow less expensive drugs to be brought in from other countries that
are safe, like Canada. I would like to see a vote on the bill that
Senator Grassley and I have to stop pay-for-delay, where
pharmaceuticals pay off generics to keep their products off the market.
We have already seen what kind of healthcare proposal my Republican
colleagues have put forward. We saw it just last year. The legislation
we saw last Congress would have hurt people by kicking millions off of
Medicaid, by letting insurance companies charge people more when they
get sick, and by jacking up healthcare costs.
Every major group you trust, when it comes to your health, was
opposed--the largest groups of doctors, nurses, seniors, hospitals,
people with cancer, Alzheimer's, heart disease, diabetes. Why were they
opposed to repealing the Affordable Care Act? Because there was nothing
good that was proposed to replace it.
We cannot spend the next 2 years going backward and fighting old
fights, as this administration announced they would do last night. We
need to focus on building on the strengths of the Affordable Care Act,
those protections, and making it even stronger by allowing seniors to
negotiate for less expensive drug prices, for bringing in less
expensive drugs from places like Canada, and for stopping pay-for-
delay.
We can also reduce premiums by passing the bipartisan bill that
Senators Alexander and Murray have for reinsurance, by passing Senator
Shaheen's cost-sharing bill, by moving on for a public option which
could be supported with Medicaid, the bill that Senator Schatz has, or
Medicare, which is another bill Senator Kaine has.
I have always said the Affordable Care Act was a beginning and not an
end, but guess what. Last night, we found out this administration truly
wants to end it.
What are real people saying about this who don't work in this place?
What are people who actually have to depend on the protections of the
Affordable Care Act saying? I am going to spend the rest of my time
this evening telling some of those stories, reading from the letters
that I and others have received about people who have been protected by
the Affordable Care Act, the very act that this administration
announced last night it wanted to repeal--not just partially repeal.
They announced they want to repeal all of it.
What would that do to people? Let's hear the stories. Let's read the
letters. I am going to read 100 letters tonight, and I am starting,
with the first letter, from my home State.
Bruce from Minneapolis has diabetes. He was spending $1,000 a month
for medical coverage before Congress passed the Affordable Care Act in
2010. Today, he pays $300. He was quoted saying: ``As an individual
with pre-existing conditions, the ACA has helped save me thousands of
dollars and given me a better lifestyle.''
Amy of St. Paul said she needs the Medicaid benefits she gained under
the ACA. What happened to her? She slipped on an icy driveway, as many
people in Northern States, in this past winter, have done. Sadly for
her, she had a brain injury when that happened. The ACA Medicaid
benefits helped to cover her medical costs.
Delaney was able to access a mammogram screening to see if she
carries the same genetic trait that predisposed several of her
relatives to breast cancer. I have worked on the EARLY Act--passed this
bill as part of the Affordable Care Act--that allowed us to do more to
help especially people who have genetically tested to have the same
gene, especially, by the way, certain women in African-American
populations and certain women who are Jewish. We have found a
prevailing gene that means they are more likely to get breast cancer
when they are younger, but before we had the Affordable Care Act, none
of this would have been covered. None of this would have been paid
attention to.
Delaney wrote that because of the bill, she was able to access a
mammogram screening to see if she had that trait. Any threat to the ACA
concerns her because the law mandated that healthcare plans cover
recommended screenings.
Story No. 4. Katherine of Minneapolis is trying to regain financial
independence after diabetes forced her out of her job. For now, she is
covered by a low-income government policy that would continue if the
ACA stays in place but otherwise it goes away. She worries that any
income from a part-time job would disqualify her for coverage and that
she would struggle to find private insurance without the ACA's
protections for people with preexisting conditions.
I think this is really important for people to know because even if
you are not using those exchanges because maybe you have employer
insurance, which over half the people in this country have, the ACA
helps you. Do you know why? It has those prohibitions that say your
insurance can't kick you off just because you have a preexisting
condition, just because you are born with diabetes, just because later
in life you have breast cancer, or, as was the case before we passed
the ACA in a number of States, if you were a victim of domestic
violence, that was considered a preexisting condition because it could
happen to you again.
So as I read these letters and tell these stories, people need to
understand that the people who have been protected are not just the
people who are getting their insurance on the exchanges. There are a
whole lot of people who are on private insurance but were protected
because the Affordable Care Act made clear that they can't be kicked
off their insurance.
Story No. 5, letter No. 5. Amy qualifies for Medicaid only because
the ACA raised the income limits to be eligible for the State program
for those with disabilities. She had 73 doctor visits after she had
this head injury, and she doubts she would have received that much care
without good insurance.
That is the same story we had here in the letter; it is the same
person who slipped and had a brain jury. This is another piece of why
this is so important, because she got a disability when she slipped,
and that means she is concerned that because of the income limits, that
could change.
Story No. 6. Kate wrote to me and shared the following story:
I call my son the baby that almost didn't happen. A bright,
loving and entirely all-boy 4-year-old, Daniel was a gift to
us after I battled cancer from 27 to 34 years old. Unable to
find care for my cancer after it reoccurred, my only
insurance option even denied my pap smears and lifesaving
tests. Cancer dotted my cervix in an attempt to overtake me;
I refused to allow it to win.
Because of the ACA, I faced a future of hope--not only for
myself, but for cancer sisters who were unable to receive
other treatment and died. My best friend's cancer scans
weren't covered by her insurance until 2015 and after
battling for 3 years, she passed last year. Special
provisions are now in place in the bill for women's health.
Healthcare is going to be more affordable for people like
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me and my children for years to come. Being a woman should
NOT be a pre-existing condition.
Story No. 7. Abbey of Minneapolis was diagnosed with a parasitic
infection at the age of 10 months old. Because of the ACA, she was
still on her insurance throughout college when she had to have two
brain surgeries and multiple eye surgeries. It also helps her pay for
the only medicine that treats her disease.
Story No 8. Mary Jo from Minnesota is struggling with the costs of
sending three kids to college. She was able to provide health insurance
for her middle daughter only because the ACA allowed her to be covered
by her father's insurance. Mary Jo writes that a reversal of this
legislation would ``be the last straw for us. Please don't take it away
from us--we're hanging on by a fingernail.''
I think that is a good one to send to the White House: This would
``be the last straw for us.'' This is someone who is struggling to keep
their kids in college and who needs the ACA to keep the kids on their
healthcare.
Tara is another one from outside of my State. Tara's young son would
not be alive if it weren't for Medi-Cal. Tara was laid off from her job
just prior to his birth, and there was an issue with transitioning to
COBRA. Her husband is self-employed without insurance, so when her son
Benjamin came, he was uninsured. Tara said:
We were hard-working Americans, but that didn't matter when
it came to insurance. Benjamin was uninsurable because of his
heart.
When Benjamin was 2 weeks old, he was taken to the emergency room,
where they learned he had a congenital heart defect that was causing
him to go into heart failure. As doctors rushed to save his life, Tara
and her husband panicked, not knowing how they would afford any care.
Tara's mom and sisters offered to sell their houses, and their extended
family looked to liquidate whatever assets they had. At that point,
someone at the hospital gave Tara the paperwork for California
Children's Services. That is where they live. They found they were
eligible, and Benjamin's coverage began shortly thereafter.
For years, Tara and her family watched their income levels closely,
keeping their income low, fearing that Medi-Cal would be terminated.
She didn't return to work for years. She emphasizes that they never
collected any other kind of assistance, but she was left with no
choice, knowing that they would never be able to find other coverage
for Benjamin.
Her mom, who is retired, takes care of Benjamin and helps her. Tara
eventually went back to work, but when she went back to work, her
husband was diagnosed with hepatitis. He now joins the millions of
Americans who have preexisting conditions. She wrote:
If the ACA is repealed and I lose my job, and insurance, my
husband and son will lose access to health insurance we can
afford. No healthcare saving will cover the cost of their
care, not on a teacher's salary. Benjamin will soon be an
adult and unable to be covered on my health insurance. I pray
he will be able to afford health insurance.
She says this is what she wants lawmakers to know--that means us,
right here, who work here:
We never collected any other type of assistance, but we had
no choice to accept the [healthcare] coverage. Please
consider the effects of repealing this act on children like
my son and our family. We are real people. We're not special.
We're normal Americans. We work hard, with some extraordinary
circumstances. We don't want a free ride; we just want help
and for lawmakers to know we're not disposable.
Letter No. 10. Kathy from Nevada says:
Before the Affordable Care Act, there were times in my life
when I had health insurance and other times when I did not.
Some employers would offer me a plan, and then if I switched
jobs, I'd lose it.
By the way, I can't tell you how many times I heard this in my home
State.
She goes on:
I tried to apply for coverage on the individual market--
This is before the Affordable Care Act--
but insurers would deny me when I admitted [and told the
truth] that I had occasional migraines and sinus issues.
In late 2013, I started to notice pain in my abdomen nearly
every time I ate anything. . . . I drove myself to the
nearest urgent care facility. Many tests and procedures
followed, and by March I was diagnosed with Burkitt's
lymphoma, a rare form of non-Hodgkin's lymphoma that's
extremely aggressive. . . . The diagnosis came at the worst
time imaginable. My mom died unexpectedly in January and a
tree fell on my house in February. I found myself running
away to escape because I was completely overwhelmed and
terrified of chemotherapy. But after about a week, the cancer
had weakened me to the point where I could barely walk from
my car. . . . I went home to begin cancer treatment.
Because Burkitt's lymphoma is so aggressive, I needed . . .
infusions of chemotherapy for 5\1/2\ days during each round,
for a total of six rounds. These infusions could only be
administered in the hospital.
When I finally finished treatment, I had amassed an
astronomical amount of medical bills. . . . If I had not had
medical insurance, I honestly don't know if I would have been
able to continue.
The gratitude I felt (and continue to feel) for the ACA and
the fact that I have medical insurance, is off the charts!
The thought of going back to the days of not having medical
insurance is so frightening to me. It almost feels barbaric,
for lack of a better term, for anyone to be denied the
opportunity to take care of his or her health without the
looming possibility of bankruptcy.
She continues:
It is truly inhumane. I recently moved to Nevada and
enrolled in their exchange. I will require monitoring for the
rest of my life. Now that the ACA is up in the air, I feel
like I am fighting for my life again! Congress is trying to
take away the one thing that continues to guarantee access to
screenings and treatment. Because of my age and my cancer
history, any plan that doesn't have those protections
guarantees that I will be charged more and that I am at risk
for being discriminated against.
Thank you for listening to my story.
Story No 11. Mendy in Virginia says:
My family's whole world was turned upside down in September
2015 when my husband, Ed, survived a massive stroke.
The stroke left Ed severely disabled. He lost the ability
to verbally express himself, needed a wheelchair, and
required help with all basic functions, including bathing and
toileting.
When the stroke hit, Ed was working for an insurance
company and I was a stay-at-home mom. His employer was kind
enough to keep us on their health insurance for as long as
they could. But within a couple of months, it became apparent
that the damage was too severe, and Ed's recovery would take
too long. His employer had no choice but to let Ed go, and
with that, we lost our health insurance.
It was frightening--I knew that Ed needed help and that
COBRA was too expensive at $600 a month. A friend recommended
that we make an appointment with a navigator at the local
health center. I had no idea help like that even existed, but
we walked out of an appointment with a silver plan for $15 a
month. . . . Our son was able to receive coverage through
CHIP.
The insurance is what we can ask for [and it is good]. It
covers Ed's physical therapy . . . our family doctor, his
cardiologist, neurologist, and all of the medications he
needs to make sure he doesn't have another stroke.
Now, you can imagine if they didn't have this coverage, and if he had
another stroke when he is not that old, it would be even more
expensive. Those are my words that I am adding.
She says:
Almost two years after the stroke, Ed can move around with
the help of a cane, but he still needs assistance standing.
What are we going to do if we lose access to insurance?
She continues:
I'm am not being dramatic when I say this is life or death.
My husband will die if we lose access to affordable coverage.
I wish lawmakers--
And I would add in this case, as we know from what was announced last
night, this administration--
could understand that they are cutting our family's lifeline.
Letter No. 12. Celeste and Larry from Michigan say:
My husband and I worked our entire lives. Larry worked as a
stone mason, while I pursued a degree . . . in social work. .
. . We . . . saved for retirement. We built up a great safety
net, but it all got yanked away. We're now 63 and 61, and I
don't know what we are going to do if the Senate takes away--
If this administration takes away, I would add--
our access to Medicaid.
In 2006, Larry was laid off from his job and he struggled
to find another job in light of the Great Recession. It
became really important for me to keep my job so that we
could maintain insurance for both of us.
Within a couple of years, Larry began to experience
problems with his memory, and doctors diagnosed him with
early onset Alzheimer's disease.
As we know, by the way, many millions of Americans are affected by
Alzheimer's--some of them way too early and some of them not expecting
it.
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This can happen to any family--what happened to Celeste and Larry. That
is why taking their word last night and looking at what they have said
they wanted to do, which is to repeal the Affordable Care Act, would
mean that not only do those who buy insurance on the exchange lose out,
but every American loses out who could have a preexisting condition or
who does have a preexisting condition.
So she says this:
He was diagnosed with early onset Alzheimer's.
Unfortunately, because he had been out of work for so long,
he wasn't eligible for disability benefits. I had to leave my
job because I became disabled. We were without any insurance
until the Affordable Care Act marketplaces opened. In order
to get by, we sold our houses, spend down our retirement, and
took drastic measures to pay our medical bills and day-to-day
living expenses. That first year, we bought a plan that cost
us only $27 a month. The next year, we qualified for expanded
Medicaid.
We paid into the system our entire lives. I don't think it
is right that lawmakers are now threatening to take
everything away from us.
She says this:
My parents immigrated to this country. English wasn't their
first language. Four out of five of us kids went to college.
All of the grandchildren went to college. Everyone is doing
well because we worked.
My family has collectively paid into the system more than
enough to cover us, but now they are talking about ripping
away benefits. Where is the justice in that?
She adds this--this woman whose husband has Alzheimer's, who was
protected by the Affordable Care Act. Do you know what she says in this
letter?
We are not losers. We are not freeloaders. We should not
have to be embarrassed or shamed for needing help. There
should be dignity in getting old, and we should be enjoying
our golden years, but that has been taken away from us. Don't
make it worse.
Story No. 13, Mary and Erich:
Let me tell you about my son Erich. He is friendly and
compassionate. When he grows up, he wants to be in a band and
to be a Power Ranger. He loves to dance to videos we find
together on YouTube. His greatest joy comes from being around
his friends at Miracle League Baseball, [and that is a
baseball league for kids with] special needs, where he plays
third base.
Mary writes:
Erich was born with Down syndrome and a severe intellectual
disability. At 20 years old, he functions at roughly the
level of a second grader. While many young adults with Down's
have been able to integrate into society and take on
employment, Erich's disability is so profound that he
requires full-time care, and he will never be able to live
independently.
My husband, Mary writes, died suddenly in 2009. So today,
it is just Erich and me. After my husband's death, I was
forced to close down the business we owned, and we lost
access to traditional insurance. Erich and I were able to get
coverage through Medicaid. It has been a critical lifeline
over these last 9 years, and I don't know what would happen
to either one of us if it were to go away.
Through the services provided by Medicaid and other
supportive programs in our community, I am able to keep Erich
at home where he belongs. He needs Medicare for speech
therapy as he has an enlarged tongue, small mouth, and weak
facial muscles. He has difficulty communicating and saying
words like ``water'' [and] ``phone''. . . . His sentences are
two and three words. Erich is prone to sinus and allergy
infections due to a smaller cartilage in his nose typical of
Down syndrome. He suffers from skin rashes due to the
infections that he gets. He does require many prescriptions
and doctor's visits and occasionally a visit to the emergency
room.
As a boomer generation widow, I need to make sure that I am
healthy enough to show up for him. He has NO ONE else. I
depend on these services, too.
When I hear about potential cuts [to Medicaid, when I hear
about repealing the Affordable Care Act], I think not just
about Erich, but about all his ``special needs'' friends he
has made over the years at the school, at the tutoring
center, and on the baseball field. Cutting or capping
programs like Medicaid will devastate us all. Many of his
friends require more services, are wheelchair bound, have
speech, hearing, heart, and constant ear problems.
As a society, and the greatest country in the world, we
have to continue to support--
In her words--
our ``special people'' and families like ours. These
``special people'' enrich our lives and show us what is
important . . . caring for each other, compassion, and
friendship.
Story No. 14, Sara in Maryland. She says:
I am a physician, and the ACA allows me to document
[healthcare issues] better and more fully. I no longer need
to worry that if a person is designated as, for example,
having acne and they have a serious condition later, they
will be denied insurance for a preexisting condition.
I thought this story in the letter was interesting because it shows
what the doctors were going through as they were trying to figure out
how they report things so this person isn't denied insurance later
because they have a preexisting condition. Now they don't have to worry
about that anymore, but if the administration wins--if they win in
their action to repeal the Affordable Care Act, like they announced
last night they wanted to do--we would go back to that situation.
Story No. 15, Tracey in Maryland. She says this:
In 2011, I began dialysis due to end-stage kidney disease.
Before dialysis and well into it, I worked as a preschool
teacher, a notoriously low-paying profession. In 2007, when I
changed jobs, I lost my employer-based health insurance.
After 1 year of COBRA, a local insurance person and a good
friend of ours told me about the Maryland State Health
Insurance Plan. Through that plan, I was able to qualify.
When the ACA began, the MSHIP [State] plan ended. In a
meeting with a member of Howard County's Health Department to
figure out how to replace my insurance under the ACA, he told
me that because of my end-stage kidney disease, I probably
would qualify for Medicare. He was right. I also have a
supplemental plan (Care First) and a drug plan [through]
AARP, and my parents help pay the premiums for those. In
2015, I had to stop working because of exhaustion caused by
dialysis. I then qualified for disability. In 2016, I had a
kidney transplant. Medicare will continue to insure me. . . .
Our hope is that by then I will be back to work, but my
biggest concern is that without the ACA, my preexisting
condition will prevent me from finding health insurance.
At the end of her letter, she asks a simple question: ``What will I
do then?'' That is a question that millions and millions of Americans
want to ask the President today. They woke up to read the newspaper or
turn on TV and found out that this administration had announced that
they want to repeal the Affordable Care Act--not part of it, no, no,
the whole thing. So when they do this, this means these protections
aren't in place. So there is a whole ton of people that joined Tracey
in asking: ``What will I do then?''
Story No. 16, Debbie in New Jersey:
I am a 48-year-old woman with chronic health issues that
require me to visit doctors every few weeks and take
prescription medications. I suffer from migraines. . . . I
also have herniated discs in my back. . . . I am self-
employed and run two businesses.
Guess what. That means she is contributing in a big way to our
economy.
I purchase my coverage on the federal ACA exchange. Before
the ACA--
Or as we know it, the Affordable Care Act--
I had nowhere to buy affordable insurance coverage that would
actually cover my health issues. Repealing the ACA will have
a devastating impact on small businesses and the self-
employed, especially those of us with health problems. I am
terrified that I won't be able to afford coverage as I inch
closer to the 50-64 age bracket. And if the ACA is repealed
and if there is no marketplace for me to purchase insurance,
I will be forced to close my businesses.
Story No. 17, Stephanie in Massachusetts:
I was born with hip dysplasia. I had surgery to correct it
at 9 months old. At best, the issue was corrected to 85
percent of what a normal hip will do. In college . . . I had
hip pain. I underwent four separate surgeries to fix
cartilage. That meant four sets of pre-op AND post-op MRIs or
other scans and four sets of post-op hospital stays.
In just 27 years, my family and I racked up hundreds of
thousands of dollars in medical bills. In recent years,
insurance covered . . . [me].
I'm honestly not sure what repeal of the ACA means for me,
but I guarantee it'll make life harder as it will for a lot
of people. I was lucky to have insurance.
Please vote no on any bill that repeals the ACA. Save my
care.
As for this story, even though she didn't know quite how it would
affect her, I can tell you that with hip dysplasia, something I have,
she has a preexisting condition, and that would mean that she couldn't
qualify for insurance, especially when it came to further hip
surgeries.
No. 18, Tegan in Ohio:
It would put me at risk of losing coverage [if you repeal]
because of a genetic pre-existing condition. Congenital
dilated cardiomyopathy killed my grandfather, nearly killed
my aunt, killed my sister, and nearly killed my brother. When
my brother, a 12 year old at the time, needed a heart
transplant, doctors told our parents that the insurance could
simply decide to not cover the procedure. They had buried a
toddler just 4 years earlier, and they were faced with the
possibility of losing another child.
Tegan writes:
We need to ensure that all Americans have access to care.
You can't predict when you
[[Page S2004]]
will get sick or injured, and you can't predict when a
dangerous genetic mutation may emerge in your family. How we
treat our fellow Americans is a measure of who we are as a
people.
That is a good one to send to the White House tonight.
No. 19, Shirley in Massachusetts. She writes:
My second daughter was born with liver disease, which was
diagnosed 9 weeks after her birth and required surgeries and
medications. Pediatricians, cancer specialists, heart
doctors, and family physicians all agree that . . .
[healthcare suggested changes that would repeal the
Affordable Care Act] will make things worse, not better.
No. 20, Sheila in Illinois:
The ACA allowed us to start a new business, in spite of the
fact that my husband was diagnosed in 1992 with hepatitis C
after receiving a tainted blood transfusion in the `70s. We
became, in her words, job creators because we were finally
able to get coverage for him outside of employer provided
coverage.
She says:
I have been self-employed for 28 years but have gotten a
job because at age 61, the fear of losing affordable
healthcare at my age could ruin our finances.
No. 21, Carter, 22 months. This is written by his family.
Meet Carter. He loves cars, swimming, and building blocks.
He requires therapy (speech, occupational, and physical),
orthotics . . . glasses, and nebulizer machine. He sees an
infectious disease, pulmonologist, and neurologist. His
disease is progressive . . . [he needs healthcare].
Story No. 22, Myka, age 7:
Myka is 7 years old. She loves the Girl Scouts, ice
skating, and playing with her friends. Myka was born with a
congenital heart defect. What does access to affordable
quality healthcare mean? It means Myka is still alive.
No. 23, Leonore in New York. She writes:
I have Parkinson's, and I have had it for 18 years and have
Medicare disability since 2008. I am 62, and the ACA allows
me to have a preexisting condition and . . . [still get
help].
She talks about her son, who is 24 years old and disabled and says:
We'd both be in terrible trouble if we lost our coverage.
No. 24, Joanna:
My name is Joanna. I am here to share the story of my
daughter Jasmine. . . . I will start at the beginning of her
life, 3 years ago, when she was . . . inside my belly.
I was four months pregnant . . . when I received the most
devastating and heart wrenching news. . . . I was told that
my precious little . . . [baby had a heart problem]. I was
told she had one of the most complex and deadly conditions
around.
I was told she would have half a heart with many of her
organs flipped.
But she was given options.
I prayed for a decision. I was quickly reminded of the
recent Obamacare legislation that would give Jasmine a chance
at life. One that is hopeful and compassionate, that protects
innocent children like Jasmine from being denied medical care
due to preexisting heart conditions, one that refuses to put
a dollar sign on her life by imposing lifetime caps, and one
that would ensure essential healthcare benefits to keep her
alive.
She was born, and she had the surgery. She says:
Thank goodness for Essential Health Benefits that allowed
me to receive proper maternity care when Jasmine was in the
womb . . . and emergency services.
I am sharing my story today as a plea to not steal these
lifetime protections away from Jasmine. . . . Please do not
tell my child and children like her that they are too
expensive, not worthy of life any longer. Please know, this
is a life and death fight for me and my daughter, and I will
do everything in my power to protect her and to stand up for
whatever is needed to keep her alive.
No. 25, Kendall in Oklahoma.
The moment I finally realized what it meant to be poor and
sick in America, I was sitting by myself in the cancer center
an hour from my home. I had arrived early for my infusion
that day, checked in and gotten that day's hospital bracelet.
Before I could be hooked up to an I.V., I was pulled into a
side room and told my insurance had denied my claim.
That is the story, and that is what is going to happen over and over
again if we go back to those old days before we had the Affordable Care
Act.
No. 26, Jennifer.
My husband Chris is one of many ACA success stories in red
state Oklahoma. In January 2006, at age 29 at the time, Chris
began working for a nonprofit that offered healthcare
benefits after a certain period of employment. A few months
later, we went to the ER thinking he had appendicitis.
Doctors quickly took him to surgery thinking the same. After
several hours, the surgeon (accompanied by a chaplain) said
he removed a large tumor from Chris' colon. He was on the
brink of death with a rare aggressive form of colon cancer.
Removing the tumor increased his chances for survival but the
cancer was far too advanced for traditional chemotherapy. The
only course of action at that point was to see an oncologist
every month for CEA labs and a colonoscopy every 6 months
until the oncologist determined he was out of danger for
recurrence. We crossed our fingers and hoped for the best.
Between 2006 and 2009, Chris tried to get health insurance
but [was] rejected due to cancer diagnosis being a
preexisting condition. Once the ACA became law, because of
its protections for people with preexisting conditions, my
husband was able to purchase a [healthcare] policy through
the federal exchange and continue seeing an oncologist for
needed care.
Miraculously, Chris has not had a recurrence--so far.
Without ACA protections for preexisting conditions, my
husband will be forced [and] (priced) out of the market.
Given the high probability for recurrence and increased costs
impeding an early diagnosis of recurrence, survival is less
likely for my husband. I cannot bear the thought of losing my
love, my best friend . . . my hero.
Story No. 27 is from Texas. His name is Mike. All he says is this:
My wife and I are uninsurable without the ACA. I take life-
saving medications.
Think of how many people just write those simple words.
No. 28, Amanda in Texas.
My son, Cooper, is 3 years old. We found out he has cystic
fibrosis when I was 14 weeks pregnant. Though he has been
very healthy for a child with CF, literally a simple cold
could change that. He will always have CF, and both
preexisting conditions and lifetime maximums keep us up at
night. Just being insured won't mean anything if there is a
lifetime maximum. By the time he reaches grade school, he
will likely have exceeded the typical ``million dollar
maximum'' we dread so much. Please keep our boy healthy.
She pleads not to repeal the Affordable Care Act.
No. 29, Adele in Massachusetts.
I was diagnosed with epilepsy at 18 years old. Beforehand,
I was dealing with chronic depression which required high
doses of antidepressants. . . . My mother is a single parent
and I am currently 22, so we try our best to be able to
afford our medications. . . . If the ACA [is repealed] it is
possible that we will no longer be able to afford our
medicines and that I could fall into a deep depression. . . .
If the ACA repeal is passed I will no longer be proud to be
an American.
No. 30, Helen in North Carolina.
Insuring me through COBRA when my husband retired would
have cost us a full third of our small, fixed income. The ACA
provided [us] not only assured access to health insurance for
me, but insurance with a premium and an out-of-pocket maximum
that fits [with] our budget.
So many of these stories involve people trying to fit their budget
with healthcare.
She writes:
That insurance allows me to continue my treatments for my
illnesses. Without my medications, I will be in extreme pain,
will have more joints eroding to the point of being
nonfunctional, and will be landing in a hospital multiple
times a year. . . . Without the tax subsidy I get through the
ACA, my insurance premiums plus the max for my current plan
would cost 80% of our income.
No. 31, Jennifer in Arizona.
I am an attorney and have been employed full-time since
graduating law school in 2006. I take care of myself, make
healthy choices, and work hard. I have encountered multiple
medical challenges in the last 15 years. I was diagnosed
with thyroid cancer in my first semester of law school and
had surgery to remove my thyroid over Christmas break that
year. The surgery damaged my [parathyroid] glands which
produce a hormone that helps the body process calcium. I
have to take replacement thyroid hormone, activated
Vitamin D, and calcium supplements to stay healthy. Over
the last 15 years my prescription costs have gone up from
$30 a month to about $110 a month.
In 2012, I had an unexplained placental abruption with my
first pregnancy and delivered my son 9 weeks early. He spent
5 weeks in [intensive care] learning to eat and breathe.
Last year, my son tripped over his Pull-up and broke his
femur. He was placed in a full-body cast for almost 8 weeks.
We [have good jobs] with good employer health coverage.
But here is the problem. Because of her problems with her thyroid,
she would have a preexisting condition. They would not get health
insurance.
We are working on continuing to be contributing members of
society, investing our savings . . . [and making sure we
participate] in the economy in every way.
No. 32, Debra in Illinois.
Our older daughter is severely disabled.
By the way, anyone who dealt with the past attempts to repeal the
Affordable Care Act knows that the disability
[[Page S2005]]
community was mobilized as never before. Because they, of anyone, the
families of people with kids with disabilities, understand more than
anyone how important this preexisting protection is.
Yet, last night, without regard to them, without regard to anyone in
America with a preexisting condition, the administration just announced
they are going all out to repeal these protections in the Affordable
Care Act.
That is what happened.
Debra from Illinois.
Our older daughter is severely disabled. Essentially a
preexisting condition since birth. In 2014 I underwent
treatment for Stage 3 . . . breast cancer. I was horrified.
Then I pulled myself together. If I can survive cancer, I can
survive [this].
But without healthcare, we can't survive.
No. 33, Felicia in Texas.
I have struggled with chronic pain for over 20 years. For
years I've gone to specialist after specialist, and pain
clinic after pain clinic. No one could tell me why regular
approaches to joint and tendon pain never worked for me.
Just last year I was finally diagnosed with . . . a genetic
. . . connective tissue disorder.
She goes through and describes what this means to her: There is no
cure for my chronic condition, only pain management.
Because these conditions are rare, [these physicians don't
know] how to help me.
She says she depends on healthcare specialists. She says she needs
the affordable healthcare act because of the preexisting condition
protection. I believe her.
No. 34, Janet in Illinois.
I have a son who survived cancer and a daughter with
Crohn's disease. My daughter's husband has Cystic Fibrosis.
Repeal of the ACA would change everything.
Let them stay healthy.
No. 35, Elizabeth in Illinois.
I am lucky (for now), in that I have coverage through my
employer. That said, even I could be impacted if lifetime and
annual benefits caps are put back in place. I have two family
members undergoing cancer treatment right now, what happens
to them? What if one of my children is diagnosed with a . . .
disease like my best friend's 5-year-old daughter was?
No. 36, Patricia in Illinois.
I have a preexisting condition as I have Multiple
Sclerosis. My treatment includes MRI's yearly and medications
that cost nearly 60,000 dollars yearly. I am now in Medicare
and Medicaid and would be left with no options as I am on
disability and could afford no insurance.
No. 37, Noel in Maryland.
I will soon be 26 and off my parents' health insurance, and
it is thanks to Obamacare that I have been able to stay on
that insurance while I have been struggling with a chronic
disease. . . . I have made great strides in recovering my
health . . . should not be punished for having a preexisting
condition.
No. 38, Megan in Texas.
My dearest friend recently donated her kidney to a two year
old child who was on dialysis, and saved his life. At the
time of her donation, Obama was President and preexisting
conditions seemed protected, and she didn't question such a
transformative medical procedure. Pre-existing Condition
coverage must remain in order to protect living organ donors
and encourage people to save lives by donating. Who would
donate an organ if they knew insurers could charge them or
not accept them? We must protect this important provision!
No. 39, Jeffery in Illinois.
I have MS. . . . Every 48 hours I inject myself with
prescription medication to prevent the disease from
advancing.
If the ACA was repealed, I would not have protection, and
MS would, of course, be considered a preexisting condition.
The ACA has allowed me to remain a productive wage earner
supporting myself and my family.
How many times do you hear this?
Please consider the personal and societal costs of
repealing the ACA.
No. 40, Lauren in California.
When I was a freshman in college, I donated blood to the
Red Cross. A couple of weeks later, a letter from the Red
Cross informed me that I had Hepatitis C--I was 18, living
away from home (clear across the country) for the first time,
and I had no idea what to do or how I might have contracted
the virus. After a year it was determined the diagnosis was a
false-positive . . . but every blood test since has indicated
liver enzyme levels outside of normal, which means Hepatitis
C will be a pre-existing condition that follows me around for
the rest of my life. I just earned my PhD and I'm still
looking for my first postdoctoral job, which means I'll need
health care coverage until I am insured by an employer. . . .
I'm screwed [if I don't have the ACA]. I've worked hard to
make good choices for my health, but now an administrative
mistake that I have no control over--
That was the information she received when she gave blood--
has the potential to wreck my chances for affordable health
insurance [if the ACA protections aren't in place].
No. 41, Koula in Texas.
I have high blood pressure & pre-diabetic. I am retired and
currently I'm covered under my employers plan as a retiree (I
pay premiums at twice what an active employee pays) until the
age of 65 then I switch to Medicare and my employer insurance
will become secondary. If you cut the requirements that
corporations offer to their employees and retirees I will be
greatly affected as I'm living on a fixed income. My
condition is heredity and no amount of exercise or dieting
will ever bring down my blood pressure enough for it to be
normal. . . .
No. 42, Joy in Texas writes:
I would be dead and/or bankrupt without ACA coverage.
Within 6 weeks of moving to Austin from New York City in
2012, I was diagnosed with stomach cancer; I had had breast
cancer . . . I came with insurance associated with my
business, a plan unavailable in Texas. When that expired, I
was kind of stunned to discover I was uninsurable. . . . For
the next 6 months, I was in the state pool and basically
self-insured until the ACA became effective. . . . Although
not perfect, it provided the coverage I needed at a price
point I could afford.
No. 43, Liz writes:
I wish the ACA had been around 10 years ago. Back then I
was almost 30 years into a happy and successful teaching
career. . . . But then along came that little glitch in the
economy, and schools were tightening belts. I found myself
unemployed, uninsured, and living with a pre-existing
condition requiring very expensive, but life extending
medications. Worse, I was living in a country where health
care is tied to one's job status.
Jobs were scarce, and age was not on my side in a tight job
market. So I worked in daycare centers, and did babysitting.
My Cobra ran out. Private insurance was totally out of reach.
Ultimately I had just one option left: I was just old
enough to retire early as a teacher and to qualify for
retired teacher benefits with TRS. It was a last resort. . .
. By law, I would no longer be eligible to teach. . . .
Without the ACA, I had to choose between my job and my life.
No. 44, Jerry writes:
Fifteen years ago I was self-employed and working furiously
to get a new company off the ground. Things were going fine
until I ran up against a brick wall--health insurance. My
wife and I had been happily paying for health coverage
through my previous employer via COBRA, but then we
approached the time limit allowed under that coverage. It was
impossible for us to buy a policy on the individual market
for two reasons: my wife had not only been recently treated
for cervical cancer, but she was also pregnant with our first
child.
He says:
Protect our care. Entrepreneurial and creative Americans
deserve the freedom to chase our dreams without having to
risk financial ruin by being denied access to comprehensive .
. . healthcare. Isn't that risk-taking spirit . . . what . .
. [people say] . . . is needed to build our economy ever
higher?
No. 45, Lisa writes:
No healthcare coverage for my chronic illness will result
in my death [because of the ACA.]
No. 46, Hannah writes:
My spouse is a research scientist. Some years ago, while
working at the University of Texas, he received a highly
prestigious national research fellowship. The fellowship made
him ineligible for employee health insurance. . . . Due to a
preexisting condition he contracted as a teenager, however,
he was denied affordable insurance. . . . We oppose the
repeal of the ACA because the denial of healthcare to
individuals based on their employment status, their economic
status, or their health conditions is deeply unethical and
ultimately deadly.
No. 47, Jaime writes:
I am a 62-year old and am currently in the hospital
awaiting open heart surgery. I am only able to have this
surgery due to being in ObamaCare.
No. 48, Devora in Maryland writes:
My daughter Esther was diagnosed with Leukemia when she was
12. She would not be able to get health insurance under the
proposed bill. She has been through enough.
That is what a lot of people in America would say right now to the
Trump administration. They have been through enough because of their
health problems and because they have worked hard, and they deserve to
be carried. They have been through enough because they have had that
healthcare threatened over and over. They voted in 2018 because they
wanted to have their healthcare protected.
Yet now, last night, the administration--not listening to that--
announced
[[Page S2006]]
they would repeal the entire Affordable Care Act.
No. 49, Darla in Michigan writes:
I'm on disability from chronic pain because of a doctor's
mistake with back surgery. I am going to have my fifth back
surgery. I live alone and am on disability. I already pay
huge premiums.
She says: If you repeal the Affordable Care Act, ``I will be
homeless.''
No. 50. Nathan in Michigan writes:
I am a builder who builds and maintains homes for many of
the wealthiest people in our State. I have worked hard and
climbed my way to the top over the last 20 years. None of the
employers in my area offered insurance, and only until the
ACA was I able to afford the healthcare I need. I have severe
asthma and have arthritis in my right hip. Even with the ACA,
we still struggle to pay my medical bills, but we manage.
He says:
Now, we are worried that . . . [if we lose the ACA] I could
be priced right out by being put in a high-risk pool because
I have preexisting conditions. I am making top dollar working
for the people who are going to reap the profits. . . .
He finishes by saying: This is taking away my ability to do the work
on their houses.
No. 51, Ellen in New York writes:
My husband has been disabled from a stroke for almost 20
years and unable to work. I am a licensed clinical social
worker within busy Private Practice doing counseling with
individuals, couples, and families. If Mental Health Services
are dropped . . . I will not be able to support my family.
My husband and I are both seniors and anticipate insurance
premium rates going up. . . . [if we don't have the
Affordable Care Act]. . . . we both have preexisting
conditions.
Erika in Washington writes:
I have triplet sons, each of which have all had a form of
healthcare issues that would be deemed under this plan to now
be pre-existing conditions.
I can't fathom the thought that another woman or a mom
would not be alive or her children would not receive the same
care we have. I will stand against anyone who threatens my
children's future access to health. I don't know a single
mother who won't be right there alongside me.
Well, I think they are going to have to go to the White House now
because we just heard last night that they want to repeal the entire
Affordable Care Act.
No. 53, Marcy writes:
I'm in fairly good physical health, but mental health has
been a lifelong struggle for me. I take medication and have
turned to therapists . . . several times over the years. I do
my best to stay mentally healthy. But there have been many
times when I needed help. . . . I believe everyone should
have access to mental healthcare. It's not something you
should choose as part of your health care plan or not.
We ALL need full, comprehensive, excellent healthcare
coverage. Essential coverage for mental health, maternity
care, well care check-ups, medication, etc. is important for
EVERYONE.
No. 54, Samantha in Massachusetts writes:
My husband has a genetic kidney disorder . . . and at the
age of 47, needed a kidney transplant. He is now, thanks to
the miracles of modern medicine and the incredible generosity
of his donor, back at work, paying taxes, and living a good
life. The transplant took place one week before the last
election, and the last thing we did before the surgery was
vote early--in large part to try to stave off the repeal of
the ACA. My husband's prospects are very good. . . . The
financial implications to both my family and the kidney
donors are impossible to predict or calculate, but the cost
of losing ObamaCare would be steep, terrifying, and entirely
un-American.
No. 55, Amal in Tennessee writes:
I feel ridiculously lucky that the ACA existed when I had
my baby, and here's why: My husband and I were both
freelancers when I got pregnant and were on ObamaCare in New
York. When I was 5 months pregnant, we moved to Nashville for
his job, which didn't provide insurance. Because of the ACA,
we were able to buy coverage, even though somehow pregnancy
is considered a preexisting condition. It could once again
become the basis for an insurance company to reject you or to
increase your premiums if the ACA is repealed.
Denying a pregnant woman insurance coverage can have far-
reaching effects. She might stay in an unhealthy job to
maintain coverage, or stay in an unhealthy or abusive
marriage to maintain her husband's coverage. A family might
forego a good opportunity to move for a better life for their
child. . . .
No. 56, Matthew in Washington writes:
I was diagnosed with a chronic medical condition when I was
9. Growing up, I was fortunate to have a mother who was able
to fight for me, from keeping me enrolled in a public school
to getting me access to experimental drugs at any of trials.
. . . But I also saw her in tears over medical bills when my
father was laid off after 9/11 and we had to go on COBRA, and
how draining negotiations with insurance companies were.
I am now successful, independent, and working in
international relations in Washington, D.C., which I love. If
the ACA is repealed, I will live in constant fear of being
laid off or fired and losing my insurance, or worry that I
will have a flare-up that would devastate me financially.
No. 57, Page writes:
I was fired in 2015 when I was 5 weeks pregnant. Thank
goodness we had the Affordable Care Act because I could not
be discriminated against under any preexisting condition
limitations. I knew my maternity care would be covered. I
logged onto the exchange, compared plans, [and] signed up . .
. I'm just so grateful that happened for me.
No. 58, Kelsey writes:
My brother has Type 1 diabetes and prior to the ACA, he was
covered on my parents' insurance, but I don't know what's
going to happen to him [when we don't have the ACA, if they
took it away.]
No. 59. Macon writes:
I'm a member of a union that takes care of me, but a lot of
people are not that fortunate and I'm scared for them. I have
family members with preexisting conditions, and by every
accounting, this bill, if it passes, is going to take
coverage away from people who are vulnerable. . . .
No. 60, Samantha writes:
I'm fighting the repeal of the ACA because my father has a
preexisting condition and he's hoping to retire in the next
few years. I don't believe plans should be changed because of
a bill that would remove protections for people with
preexisting conditions. . . .
No. 61, Golchin from Nevada writes:
It will be really hard for us to get insurance since I will
be [considered having a preexisting condition]. . . . We
would love to start our family. . . . Having kids is all we
talk about, so please don't take that away from many of us.
No. 62, Cathy writes:
ObamaCare saved my life. I had health insurance. I needed
brain surgery. My health insurance company kept delaying
approvals. . . . Because they refused to pay for a CT scan
that was needed to confirm a diagnosis, I had to pay for one
out of pocket. . . . But, because of the public pressure,
when ObamaCare was being drafted, my surgery was eventually
approved by the insurance company in 2009.
I am deeply concerned that legislation repealing ObamaCare
could leave in place devastating and historic cuts to my
hospital. Please do not gut protections for those of us with
preexisting conditions. . . . Do not eliminate services for
special needs kids.
No. 63, Jennifer in Nevada writes:
If the ACA is repealed, my healthcare might go away and I
could never afford continuing care with my . . . [heart
condition] . . . and my husband's arthritic condition. When
my battery runs out in four years, if I don't have health
insurance, I'll probably die or have to go bankrupt. . . . My
brother also has heart trouble. . . . And for what? So that
the wealthy can have more . . . ? Our government is supposed
to work for our best interests. . . .
No. 64, Adrian writes:
In 1986 to 1987, I was diagnosed with [genetic] breast
cancer and was told I had a 25 percent chance of living 5
years. I quit my job to have medical treatment, and, after
COBRA coverage ran out, was put in a high-risk pool
(Illinois). My insurance payments were high . . . I had to go
back to work to pay for . . . [them]. If that's what happened
30 years ago . . . [what would happen now if I had a
preexisting condition and couldn't get insurance coverage]?
No. 65, Michelle writes:
I have had three surgeries for the ``chronic disease''. . .
. Prior to ACA, these surgeries would not have been covered.
. . .
No. 66, Elizabeth writes:
Please do not allow States the ability to opt out of
holding insurances companies accountable to cover essential
health benefits like maternity care, mental health treatment,
and rehabilitation treatment. As an elementary public art
educator, I know firsthand the importance of [the] mental
health care [provision]. The school district I serve . . .
has suffered the loss of four students who have taken their
own lives just this year to battles with mental and emotional
issues, the youngest of whom was 12 years old and a former
student of mine from the first year I taught. . . . These
saddening and possibly preventable deaths have rocked our
community. Coverage for mental health and treatment will
allow parents the ability to seek help for their children
whose precious lives hang in the balance in the politics
of healthcare. Affordable care helps destigmatize mental
and emotional illnesses, giving these students the
confidence and ability to speak up.
People have long stories, and they care about this a lot.
Story No. 67, Karen:
My friend Mary was never able to purchase health insurance
until ObamaCare passed. She bought a policy the very first
day it was available to her. A few months later, she was
[[Page S2007]]
driving, and she was almost killed. She required prolonged
care and rehab, which would not have been available to her
before she had health insurance. Through good care, hard
work, and persistence, she is alive and again a productive
member of society. Please do not take healthcare away from
people like my friend Mary.
No. 68, JoSelle in Florida:
I am self-employed as a freelance editor and writer and
have been for most of my post-college life. Unfortunately, I
also have preexisting conditions.
Pre-ACA, I was ineligible for insurance despite taking some
of the cheapest, most common medications on the marketplace.
I was forced into a high-risk pool in the State where I lived
at the time, Utah, which placed an enormous financial burden
on me. . . . Post 2014, I can afford to pay for my insurance.
Of course, the ACA isn't perfect. I am sympathetic to those
who faced premium increases under it or who found their
access to healthcare diminished. However, the logical thing
to do is to improve it, not demolish it.
That is a pretty good line. Send that one to the Justice Department.
I urge all people reading this to stop and think. Whether
you voted for Clinton or Trump, whether you preferred one of
their primary challengers to either of them, whether you live
in a red, purple, or blue State . . . it does not do to not
have the Affordable Care Act.
No. 69, Kat in Kansas:
I had advanced stage 3 breast cancer and inflammatory
breast cancer. I am now on disability. Contrary to what many
have said, I did nothing to bring this on myself. I ate right
and exercised. I didn't smoke. My cancer was genetic. So was
the heart problem I had. I did not ask for this. Disability
is no picnic. I can barely make ends meet. If the ACA is
repealed, I will be homeless at the best and, at worst, dead.
No. 70, Lois in New York:
Breast cancer runs throughout my family on both my parents'
sides. My mother, aunt, and cousins have all had this
disease. Some have died from it, including my mom. When I was
23, I had a lump removed. Luckily, it was benign. The
anxiety, pain of discovery, and treatment are excruciating
enough without having to worry if you can afford care.
No. 71, Penny in New York:
My son has a life-threatening preexisting condition for
which he received medical treatment and medication through
the ACA expansion of Medicaid in the State where he lives.
Without this, he will be unable to pay for his medications
and doctors' visits and will surely decline. Both my mother
and my husband's father were able to be cared for in nursing
homes, until their dying days, because of Medicaid. I am
desperate to make sure we keep our healthcare.
Thank you for listening.
No. 72, Jen:
In 2015, I donated a kidney to a stranger, kicking off a
chain of three transplants. I didn't have to worry about how
it would affect my health insurance because, thanks to the
ACA, I could never be charged more or be denied coverage
because I shared my spare kidney. I am 55 years old and self-
employed. This repeal will be a direct attack on my financial
and health security.
No. 73, Jolene:
I know many of my friends rely on Medicaid. Losing it means
the loss of their lives. They cannot afford their medications
without the ACA.
No. 74, Deborah:
My family's story is over, but I want people to know how
much the ACA meant to us at a very difficult time. Our niece,
a single adult, lost her job and her insurance coverage when
she was in the middle of the fight for her life, battling
advanced melanoma. Because of the ACA, she was able to sign
up for insurance on the marketplace. I will be very honest
and say it wasn't easy, and she was forced to change
insurance companies because of changes in available plans.
However--and this is big--
she writes in capital letters, sort of similar to the President's
tweets--
she was able to get coverage despite the fact that she was
very ill. Anyone who has watched a loved one suffer from this
devastating disease of melanoma knows how terrible it is.
Even though she eventually succumbed to the melanoma that had
spread throughout her body, she was able to have continued
quality medical care and, eventually, hospice care until her
death. I beg you to consider how your decisions will impact
people. Even the least of those among us--
That was a quote she put--
deserve the dignity of receiving quality medical care.
Think about this. This is a story of someone whom she lost in her
family, and she is making a point that, I think, many would make in
this Nation. Even when people are going to die, they want to have them
die peacefully. They want them to have good healthcare. They don't want
to have them taken off of their insurance because of preexisting
conditions.
Story No. 75 talks about how a financial burden in the early 2000s
forced him into bankruptcy. The reduction of work hours and required
continuing medical costs left him unable to afford healthcare.
Now, with the potential loss of affordable healthcare on
the horizon, my wife is facing a similar situation with her
preexisting condition.
He writes:
Anyone is one step away from a financial disaster due to
the onset of a serious medical condition. Believe me, I lived
it first hand, and I didn't see it coming. I think most
people who get suddenly sick would say the same thing. They
have gone through their lives. They are working hard. They
didn't see it coming. That is why we need the protections of
the Affordable Care Act.
No. 76, Jackson:
Most of the people in my family are likely to lose coverage
without anything less than the protections established in the
ACA. Any one of us without the ACA would be one car accident
or illness away from bankruptcy.
That kind of says it all.
No. 77, Allison in Utah:
My husband and I are self-employed, so we buy our insurance
on the open market. Although we were much healthier than some
people when we applied for insurance prior to the ACA, we
were both rated out because of preexisting conditions. I was
even rejected by one company. This seemed ridiculous since
the preexisting conditions that caused the rate increases
were injuries from being active and were both completely
resolved. This made our insurance astronomically expensive.
When I say we are healthy, we really are healthy. We are
lean; we are trim; we are in our mid forties; but we can run,
hike, climb, and do more pushups than most people in their
mid-20s. We eat healthy, exercise hard, and never get sick.
At the most, we might catch one cold a year between the both
of us.
Since the ACA, we have had no problem getting health
insurance, and we are not rated out because of preexisting
conditions, but the best part is we feel comfortable that we
have health insurance. Now it sounds like people are scheming
to take away the protection we enjoy under the ACA.
OK. They are not just scheming. They actually announced last night to
the entire country that they were going to do this. People woke up.
They watched the TV. They looked at their newspapers. The
administration said, yes, it is not going to repeal just part of the
ACA; it is going to repeal the whole ACA.
It goes on to read:
We are against their attempt to take away the mandate that
prohibits insurance companies from discriminating against
individuals with preexisting conditions.
No. 78, Erin in Missouri:
Ours is a story of a genetic mutation that none of us could
fathom would bring incredible health challenges to our
family. We are the lucky few that have jobs that provide us
with insurance. My grandfather's sister was the first to be
diagnosed with breast cancer. My mother's cousin and her
sister were next. Then my mom was diagnosed with uterine
cancer. Then I came along at 32 with the diagnosis and then
my sister. Now, as I type this note, my 78-year-old mother
awaits another radiology appointment.
This story is filled with heartbreak and much love. These
are the things patients should have to worry about, not
whether they can afford their care or be discriminated
against because they carry a gene that is beyond their
control.
No. 79, Mary in Massachusetts:
We have MassHealth and great hospitals. Without both of
these, my daughter would have died at birth. Everyone, no
matter their income, deserves proper access to healthcare
even if you have a preexisting condition or a previous
illness. Every time I look at my daughter, it affirms this.
No. 80, Brent:
When I graduated high school, my dad informed me that he
had paid enough for my health insurance, and now that I was
an adult, he wasn't going to pay for it anymore. That's it.
That was the entire conversation. I had no idea how to get
health insurance for myself, much less how to pay for it, so
I just went without for 7 years. Within that time, I had
health problems.
My sister lives in France.
He talks about her getting protections.
Instead of being punished, we should be able to have
healthcare. This is no way to run a democracy. This is no way
to be a decent human.
No. 81, Tina in Texas:
I have stage 4 colon cancer, and I am currently on private
insurance. I will be forced on to Medicare in another year as
I am currently on disability. My life span is at risk if the
provision to cover preexisting conditions is abandoned. I
have literally risked my life in order to participate in a
phase 1 drug trial to help advance our knowledge of treating
cancer. How good is that knowledge if we will not be covered?
No. 82, Julia:
I am a 29-year-old adult who was diagnosed with a syndrome
at age 9, and all through
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most of my life, I have had no real help besides my mom, but
she is a single mom. There is not just me but my brothers and
sisters as well as there is only so much one person can do.
She writes:
Help me.
No. 83, Nicole in Kansas:
I am writing on behalf of my 15-month-old daughter, Mira. I
experienced a normal pregnancy, a normal birth, and a normal
maternity leave, but around the 4-month mark, we learned that
Mira had a neurological disability that may very well render
her unable to walk or talk. I could not return to work for a
year while I was acting as her mom.
The ACA is the only thing that kept our family afloat in
the most difficult year of our lives. If the ACA is repealed,
Mira, who has absolutely no control over the state of her
health--
a 15-month-old kid--
she will suffer needlessly. Please help us.
No. 84, Jane:
I am a psychologist with a Ph.D., employed for the past 30
years in community mental health centers. I have a serious
preexisting condition that made me completely uninsurable
before the ACA. Access to healthcare matters.
No. 85:
Because the ACA mandates access to free mammograms, I got
one this year that resulted in a breast cancer diagnosis.
Because the ACA mandates coverage for genetic testing, I was
able to have that done and found out I have a gene that means
I am at risk for cancer. My risk of ovarian cancer was 60
percent. My risk of breast cancer recurrence was 70 percent.
I get to ensure that won't happen to me. Yes, early menopause
and a mastectomy suck, but they are a whole lot better than
radiation, chemo, and possibly death.
No. 86, Ashley:
In 2012, at the age of 29, I had my first job and was
diagnosed with a heart disease. This is a pregnancy-induced
form of heart failure that occurs in women with no prior
history of heart disease. My recovery has been a long and
brutal one of heart disease. I was on a life vest--a portable
defibrillator--for the first month, and I should have been on
it longer. I will always have a preexisting condition. The
ACA makes me safe.
No. 87, Lea:
I am a wife, mother, grandmother, sister, aunt, and great
aunt. In my family, my husband and I owned a small business
and couldn't change health insurance because of a preexisting
condition in one of my children. As a sister, I watched my
older sister fight cancer while still working 12-hour shifts
as an RN. As a great aunt, I have watched my niece handle two
sons with medical conditions. These people deserve the health
insurance that does not have any lifetime maximums, and they
should be able to pay reasonable premiums.
No. 88, Hillary from New York City and Kansas.
Although I live in New York now, Kansas City is home. I was
raised in KC, attended Shawnee Mission Schools and KU. My
friends, family, and a piece of my heart remain there. I was
born with spina bifida, so I have always had a preexisting
medical condition. I need affordable healthcare.
No. 89.
Eleven years ago, I had just turned 23.
She talks about her pregnancy, how she needed the protection, and how
the Affordable Care Act--now that she has a preexisting condition and
has a photography business and her husband's work insurance doesn't
cover her, ACA has saved her and allowed her to work, and she has a
beautiful baby.
No. 90, Laura.
My son Danny was born at 30 weeks gestation via emergency
C-section. He was diagnosed with spastic cerebral palsy at
the age of 1. Without the protections of the ACA, we would
not have him. Now we don't have to worry about lifetime
limits, preexisting conditions, and the security of knowing
we could keep him on our insurance until he is 26.
No. 91, Kerry.
My initial surgery, a bulging disk, happened when I was 17
and a senior in high school. When I was 18, the disk
herniated. I had back surgery at 19, and then I felt like a
new person. No more crawling to the bathroom every morning,
no more chronic pain. In June 2003, I was days away from
being kicked off my parents' insurance when I reinjured my
back.
Then she talks about how, later, the ACA helped her.
Now I am going to finish up with letters from my own State.
No. 92, Kayla from Belgrade. Kayla lost her child to cancer and wrote
to me that if protections for preexisting conditions are taken away,
more families will suffer similar heartbreak.
No. 93, Katie. Katie told me that without protections for individuals
with preexisting conditions, she would not have been able to have
gotten her diagnosis and beat cancer.
No. 94, Tony. Tony is afraid that without the protections provided by
the Affordable Care Act, he will be unable to afford healthcare or be
denied coverage because of his preexisting condition.
No. 95, Alison. A nurse named Alison from Minnesota is concerned that
changes to the health law could make the homeless populations she works
with even more vulnerable.
No. 96, Julie. Julie is concerned for her young son, Hudson, who has
asthma and a rare food allergy. Without protections for individuals
with preexisting conditions, Julie believes Hudson will be forced into
a plan that will dramatically reduce his access to healthcare or,
worse, prevent him from getting health insurance to begin with.
No. 97, Sarah. Sarah was diagnosed with stage IV colon cancer when
she was 34 and has undergone countless rounds of chemo. She fears what
the ``scarlet letter'' of having a preexisting condition will mean for
her access to care and wonders how she will be able to receive the most
cutting-edge treatments.
No. 98, Kate. I remember Kate. Kate did a video, and she became
famous. She wrote to me about her son, Cooper, who has severe,
nonverbal autism. Because of Medicaid, Cooper has access to the care he
needs, and Kate can keep her job. Why were they famous? Cooper was
featured on Jimmy Fallon and the ``Today'' show for being the cutest
toddler to say ``mama.'' He started a contest, and his mom Kate decided
to enter herself and her son saying ``mama.'' Cooper can't speak, but
he uses a speech device to help him communicate. She sent in her video,
that was the one they picked, and Cooper became a star.
Kate is afraid that changes to Medicaid could force her to quit her
job in order to take care of Cooper. How could she explain that to her
sons?
This is another story of someone who has a family member--in this
case, her beloved son--with a disability that would then be considered
a preexisting condition. Maybe there would be a way to cover him, of
course, under disability insurance, but then you start messing with
whether his mom can work. We would be right back where we were before
these protections took place.
Story No. 99, Penny of St. Paul. Penny works with disabled veterans,
but she has a chronic condition of her own--rheumatoid arthritis.
Thankfully, her current insurance allows her to get the care she needs.
But without the ACA, Penny is concerned that she and many others with
treatable conditions will be unable to afford their medications.
Last, Ariane. Ariane had triplets at just 28 weeks, and her pregnancy
included three hospitals stays and bedrest. Without the ban on lifetime
caps, Ariane said she would have lost everything.
Those are just 100 stories. Think of the millions more, the millions
of people who would like to tell the President and the Justice
Department and this administration what it would mean if what they said
they wanted to do last night actually happened. These are just 100
people from across the country.
I hope my colleagues are listening to this because just last night,
this administration announced that they were going to go all-out, that
they were going to do everything to repeal the Affordable Care Act.
These 100 people are not going to let this happen. You have heard the
stories of those moms who will do anything for their kids with
disabilities. You heard the story of the woman who, while her family
member was lost to melanoma, that coverage for a girl who would have
had a preexisting condition allowed her to have a peaceful life in her
last weeks of life.
These are the stories this administration needs to hear to understand
that this isn't just some political battle to see how this sits with
your base, to be against ObamaCare; these are real Americans with real
healthcare needs. We will fight this on their behalf to the end.
Mr. President, I yield the floor.
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