[Congressional Record Volume 163, Number 49 (Tuesday, March 21, 2017)]
[House]
[Pages H2247-H2248]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        MNIKESA'S ACA TESTIMONY

  The SPEAKER pro tempore. The Chair recognizes the gentlewoman from 
Connecticut (Ms. DeLauro) for 5 minutes.
  Ms. DeLAURO. Mr. Speaker, I rise today to share the testimony of one 
of my constituents. Her name is Mnikesa Whitaker-Haaheim. She is a 
fifth-generation, college-educated woman, founder of Ballet Haven, a 
rigorous dance training program. She is an English teacher who has won 
the Teacher of the Year award twice. And I regret to tell you that she 
is also living with and dying from a debilitating disease, and these 
are her words:
  ``The debate about healthcare has turned into something of a 
spectacle--as if it exists apart from the flesh and bones that are 
experiencing the consequences of the decisions being made. I think it 
is exceedingly important to talk about the felt experience of illness.
  ``The feeling like an elephant's sitting on my chest--daily--because 
I

[[Page H2248]]

have pulmonary fibrosis. No, I have never smoked. Not cigarettes. Not 
anything. Ever. I am simply sick. The feeling of my leg bones 
splintering, waking me up with the pain, several times a night, several 
times a week. Each leg is splayed beneath me as if I'd fallen from a 
window. Of course that's not what happened. This is just what joints 
and muscles feel like as part of my rare disease.
  ``The feeling of having a widespread flu-like, bone-crushing ache 
that does not end. I don't have the flu. I have a rare, autoimmune 
disease. This is what my entire body feels like 90 percent of the time. 
The feeling of choking without warning, regularly on coffee. On water. 
On my own spit. This is what my disease feels like.
  ``The feelings I'm talking about are what it is like to not be able 
to take a deep breath, ever, because over 70 percent of my lungs have 
turned to hardened, stony, scar tissue. The feeling of not even 
remembering what it is like to take a deep breath.
  ``Because my particular disease is one that is categorized as 
autoimmune, it would be several months before we got the correct 
diagnosis; autoimmunity is notoriously difficult to diagnose.
  ``And unless you are a specialized medical professional or happen to 
know someone who is afflicted by rheumatoid disorders, you have likely 
never heard of what I have: anti-synthetase syndrome--scleroderma. It 
is rare, progressive, and aggressive. Often it is fatal, especially 
with the amount of lung damage that I have incurred.
  ``When after 2 years of chemotherapy, the progression of my pulmonary 
fibrosis and overall disease process was not successfully remaining 
stable, I had to go on supplemental oxygen. Within 6 months, I was 
getting so sick that I eventually had to medically retire at 36 years 
old; it was a heartbreaking decision.
  ``I loved my job, and I was good at it. Without the protections 
afforded to me through the Affordable Care Act, my oxygen, the cost of 
seeing my numerous specialists, paying for 14 medications, admissions 
to the hospital, and life-threatening emergency trips to the ER would 
be nothing short of financially catastrophic for my family.
  ``A rare disease like mine baffles many doctors. It has not been 
uncommon for my caretakers to have to spend hours on the phone with 
insurance companies fighting for a drug that is literally thousands of 
dollars but necessary for my treatment.
  ``When you have a rare illness, you often have to try new things. 
Insurance companies will unabashedly see you as a risk. Why? You are 
expensive, rare and dying. That is an unholy trinity.
  ``But since the Affordable Care Act, my medications have been 
affordable. Access to care is not accessible if you cannot afford it, 
and what the ACA has done is create a safeguard so that the care that 
my doctors have prescribed for one of their sickest patients is truly 
accessible to that patient because I can afford it.
  ``I come from a family who has, for generations, always worked and 
always paid into `the system.' There are next to no services available 
for a relatively young woman like me at social services. I know. I've 
checked. I am not old enough for a full teacher's pension, but do 
receive a small disability allowance. I receive a small Social Security 
check, but I am well below the poverty level.
  ``I need you to understand that people like me are not asking for 
anything for free. I am willing to continue to pay for the quality 
health care that I have had. I am willing for there to be changes made 
to it.''
  ``I find it unconscionable, however, that decisions can be made 
regarding life and death without actual regard for the felt lives and 
actual deaths that you will be responsible for if you repeal the ACA.
  ``I do not know the course that my disease will take. But I have the 
blood of some powerful ancestors flowing in me, and their fight for 
life continues in me as well. I am honored to do so in their memory and 
on behalf of the millions of Americans who do not have the words or the 
ability to speak for themselves yet are terrified of losing their 
affordable, solid coverage under the ACA.''
  Those were her words--and she is not alone in her fear of repeal. Mr. 
Speaker, I will enter into the Record testimony from other women in my 
district whose lives have been changed by the Affordable Care Act.
  Mr. Speaker, we owe it to Mnikesa and everyone like her across the 
country to protect their health care and to reject this repeal bill.

                          ____________________