Do you remember where you were on March 23, 2010? Most people do not have that date burned into their memory, but JesAnne Bouchard certainly does. When I interviewed her for this article, she told me how the events of that day changed her life dramatically. If you do not already know, that is the day that the Patient Protection and Affordable Care Act, otherwise known as Obamacare, was signed into law by President Barack Obama.
Reflecting back to that time, you might remember how many of us were enthralled in the saga leading up to the passing of the legislation. We wondered if our esteemed lawmakers would have enough sense to at least read the bill before signing it and sending it to the President. After all, Nancy Pelosi said, “We have to pass the bill so that you can find out what is in it…” I still shudder when I type that quote.
Some of us were equally disgusted by the bill’s content and the thought, or rather the lack of thought, that went into how to actually implement it. Our country was never more divided politically, but no matter where you stood on the right or left side of the healthcare debate, almost everyone wondered how and when we would all begin to be affected by the legislation. Many people then and now did not feel they would see many changes in their lives at all, but those with serious health issues were afraid and worried about the consequences far m ore than everyone else. As it turns out, they were frightened with good reason.
JesAnne Bouchard was waiting at the cancer center in her town the day the legislation was passed. She was 27 years old, facing one of many treatments that would possibly slow or even stop the severity of symptoms related to paraneoplastic neurological disorders (PND). She is afflicted with this terrible disease that is the culmination of many conditions that affect the nervous system (brain, spinal cord, nerves and muscles) and stems from a type of cancer. The tricky part is that this cancer disrupts the systems of the body, primarily the immune system, which in turn creates the problems of the nervous system, affecting far more than just the area of tumor growth. It is a very rare and difficult cancer to diagnose and treat because it starts doing its damage quickly and often times before the cancer even presents itself. According to the Abramson Cancer Center, “In about 60% of patients with PND the neurological symptoms develop before the presence of a cancer is known.” So even the most astute physicians can mistake the symptoms for other illnesses and the patient is left confused and terrified as to what is happening with their body. Paraneoplastic antibodies in the blood and spinal cord confirm the diagnosis in the group that presents without cancer first. JesAnne falls into this category, perplexed and terrified by all of the symptoms as she awaits the arrival of the cancer.
In the meantime, all she and her doctors can do is try to aggressively treat the symptoms and slow the onset of the cancer. Her life is spent going from one doctor’s office after another. She frequents neurologists, gastroenterologists, gynecologists, immunologists, etc., because this disease adversely affects all of the systems of her body. It is a life of uncertainty, fear, and pain that most of us could never imagine.
Prior to her diagnosis, Jes was working and enjoying her life, carefree and happy. She loved her job with the Girl Scouts of the USA, and had already been with the organization for 11 years by the time she was 26. She was a hard worker, dedicated to helping others and working since the age of 15. She decided to take some time off of her job at the Girl Scouts to go on a mission trip. According to Jes, she was “heavily invested in young people and wanted to make a positive impact on their lives.” But as she was training for the mission trip, her boss noticed something alarming. Jes was stuttering badly. Within days, Jes was also losing her ability to hear. Strange and debilitating symptoms were coming on rapidly, but just as quickly, they went away. This is the confusing part of PND and one of the reasons it is so difficult to diagnose. For the next year, Jes went to one specialist after another as her mysterious symptoms waxed and waned. Finally in 2005, the Mayo Clinic confirmed her diagnosis. By the age of 27, Jes could no longer work, and like many young adults in their 20’s, she did not have health insurance.
For the next five years, as she began to adjust her life living off of Social Security Disability and Medicaid, she watched the healthcare debate play out in America and hoped there might be a positive outcome. With the programs that were already in place, she was able to obtain necessary medical treatments. She had access to exceptional doctors, and she was living on her own. On that infamous day of March 23, 2010, as Jes awaited treatment in the cancer center like she had so many times before, President Barack Obama was signing the legislation that would change all of that. Within one hour of signing the bill into law, Jes was told that she could no longer receive her treatments “due to recent legislation.”
Since that time, as her symptoms have progressed and her quality of life has declined, the amount of money she receives from the government has also decreased. Now, regardless of how liberal or conservative a person finds themselves, I would assume almost everyone agrees that people like Jes are the reason we have disability, food stamps and other government-run programs, and that the money should be there to help individuals like Jes. After all, her story could be any of our own. She could be our sister, daughter, or friend. No one wants to see Jess go without the necessities she needs.
However, because President Obama lowered the qualifications necessary for people living in the United States to receive government benefits, he dramatically increased the number of recipients, which in turn, decreased the amount of money available to the people who truly need it. We also have as many as 20 million or more illegal residents of the United States who can walk into any hospital in the country and receive treatment after paying nothing into the system; and yet, we have someone like Jes who began working and paying taxes at age 15, who now depends on certain government benefits to live but has to share them with everyone else who never contributed to the system.
Under President Bush, Jes received $176 per month in food stamps, for example. Now under Obama, she has to live off of only $14 per month. One wonders if this was the “change” that supporters were really voting for with Obama? As with the entire healthcare legislation, when the government steps in to “help” too many people, it has the unintended consequences of hurting people instead.
As doctors, hospitals, clinics, and insurance companies have anticipated the full effects of Obamacare, preparing and working to protect themselves, patients like JesAnne Bouchard have been lost in the shuffle. I have written before about the fallout. More and more doctors are abandoning the practice of medicine. In a Deloitte 2013 Survey of U.S. Physicians, six in ten physicians say they will retire early and believe that the practice of medicine is in jeopardy thanks to Obamacare. Three-quarters of all physicians believe the best and brightest will no longer be attracted to a career in medicine, and more than half plan to scale back practice hours and retire early. Over half of all surveyed had seen a decline from the year before in their take-home pay, and most believe that they will see a substantial decrease in pay over the next year to three years. Surgical specialists are affected the most by losses in salary. Most all physicians cite reimbursement from Medicare and Medicaid as a substantial problem and a reason for abandoning their practices or scaling back, but this particularly applies to surgeons.
So where does all of this leave Jes, with all of the upheaval with practicing physicians? Well, at the moment she is awaiting a very necessary surgery. She was recently told that there are no longer any doctors in her area who can perform the operation she needs. For something many doctors routinely did a few years ago, she will now have to go out of her area to find a qualified surgeon. The kicker is that Medicaid will not pay for the surgery outside of her area without 20% of the costs paid upfront. So Jes is penalized because there are no doctors in her area who can or will perform the surgery. If she were not a Medicaid patient, she would almost certainly have many doctors to choose from in her area. Doctors don’t want to work for little to nothing, so most are opting to steer clear of Medicaid patients now thanks to the cutbacks that the Obama Administration has implemented. Obviously, this puts Jes in a terrible dilemma.
Obama and the Democrats passed the “Affordable Care Act” as a promise to take care of people who need health coverage the most, but in doing so, they have allowed the decline of the entire healthcare system, and now the people who were receiving very good care before are no longer able to get the care they need at all. Worse than that, the few benefits someone like Jes still receives will ultimately run out as Social Security and Medicaid financially run dry and doctors, hospitals and insurance companies scramble under the rules of Obamacare.
The Social Security Administration’s website, under the section “A Message from the Public Trustees”, states that “both the Social Security and Medicare programs face substantial financing shortfalls that require legislative corrections but the implications are different for each one. Of the two programs, Social Security faces the larger actuarial imbalance as well as the most immediate threat of trust fund depletion, again projected in 2016 for its Disability Insurance (DI) Trust Fund.”
You read that right. Funds are projected to run out in 2016. So what will happen to Jes when she can no longer receive Social Security Disability? Her medication costs already total more than she receives in benefits. I asked Jes what she plans to do.
JesAnne told me that she will have to live in her car. In fact, as I write this article, I am saddened and distressed beyond words that this woman is denied necessary surgery, benefits she needs to live at even the poverty level, and access to other treatments. She said, “If the government had a heart it would just take me out back and shoot me, but instead, it is allowing me to die a slow and miserable death.”
What are we doing? How can something like this happen in our country? Every day we take care of people from other countries because it’s politically incorrect to turn them away, but yet, we deny help to fellow Americans! It is an outrage!
Jes can no longer eat solid food, so she must drink several cans of Ensure every day to receive her nourishment. At a cost of almost $3.00 each, Jes cannot afford to purchase this for herself. Her body is starving to death as she tries to find a way to pack her things and move into her car. In the midst of all of this, the Obama Administration has missed half of the statutory deadlines required to implement the healthcare legislation it forced upon the American people. It has every business, physician, hospital, and citizen of the country completely perplexed as to how to implement the government’s mandatory healthcare plan. It has been a terrible experiment, but for people like JesAnne Bouchard, one that has cost her the most– peace of mind and comfort in her final years.
When I asked Jes why she wanted to tell her story, she said that she believes her life has a great purpose. Her mind and spirit are 100%, even though her body does not cooperate. She receives grants and loans to attend school and will graduate this December with a Bachelor’s Degree in Sociology. She keeps her mind active and stays busy educating herself and others. In JesAnne’s words, “In as much or as little time as I have left, I want to help people. The only way I know to do that is with my knowledge. Education is so important. I want people to know about Obamacare and to educate themselves on what is happening. I want my story to help people realize what a terrible thing it really is.” And with only $9 to her name and no place to live but her car, her last words to me of the interview were, “Don’t get me wrong, I am incredibly blessed. I have more than many, many people and I consider myself to be very fortunate.”
With tears in my eyes and heaviness in my heart, I will close this article. I wonder how many people in her shoes would find reasons to be optimistic and consider themselves blessed? I hope people will learn from Jes and educate themselves about this legislation and rise up to oppose it. Jes is still fighting, so what excuse do the rest of us have to quit?
God bless you JesAnne Bouchard. You will never stop being an inspiration and a gift!