Below is one of the many stories we’ve collected the past year from patients and doctors all across America:
One summer, I had the unfortunate experience of having to deal with the Health Care System when my adult son had a recurrence of head and neck cancer.
Three years prior to that he had a cancerous tumor removed from his neck. The surgeon was able to surgically remove the tumor and my son did not require chemotherapy or radiation therapy. He was let go from his job right after informing his employer that he had cancer. Losing his job was horrible but at least his insurance was in place and covered almost all of his medical expenses for the surgery. He bought Cobra coverage and was able to have a follow up appointment with an ear, nose, throat (ENT ) physician in a major health care system. He was advised to follow up in six months with an oncologist to make sure he remained cancer free. For the next few years he was unable to obtain any long term employment. He was able to get sporadic jobs that lasted only a few months and did not provide health insurance. He went through all of his savings and was living hand to mouth, so he never did see an oncologist during that time.
Three years later, in the spring, he landed a job with a project that would employ him for at least a few years. In early summer he noticed a lump in his neck. Within a week or two it grew to a sizable mass and he was experiencing a great deal of pain. His girlfriend (who doesn’t live in his hometown) came to visit and insisted that he go to an emergency room. He went to the major health care system where he had last seen the ENT physician. He explained that he did not have any money and that he did not currently have health insurance but he thought his insurance would be in effect soon. The ER physician told him he needed a CT scan and he needed to see an oncologist but without money or insurance he would have to apply for state aid. If he was not eligible for state aid, he could then apply for their system’s charity care.
A social worker at the clinic helped him fill out paperwork to apply for state aid. The ER physician gave him a prescription for pain relief and sent him home. The pain continued to get worse, he was having trouble eating, swallowing and talking and he was extremely fatigued. He could not perform his job and his employer told him not to come back to work until after he got a doctor’s release. Consequently, his insurance did not go into effect as eligibility is determined by sequential hours worked.
After a few weeks, his condition worsened and he had still not heard from the state regarding aid. He called the clinic’s helpline and again was told to go to the emergency room. Another doctor saw him, told him he needed to have a scan and if he did not have insurance, or state aid, he would have to bring a $5,000 deposit to the finance office in order to schedule the test. My son told the doctor he had no money or insurance and had not heard back about the state aid. That doctor gave him another prescription for pain relief and sent him home.
His girlfriend called me to tell me his condition was deteriorating and they didn’t know what to do. Someone told me he should go to the county hospital’s ER. His cousin took him there and again saw an ER physician who prescribed pain relievers. I got a flight the next day and started calling every oncologist in his city to see if anyone would see him. The answer was always the same, no money, no insurance, then apply for state aid.
I contacted the state aid office and made an appointment for an interview. I assembled all of the necessary paperwork and my son and I went to the aid office where we put his name on a list then sat with approximately 75 other people in a waiting room and waited for hours. My son had to lie down in the car I had rented until they called his name. Even with pain medication, holding his head up caused excruciating pain so the wait and the interview was extremely distressing.
Soon my son received a letter stating that his application was denied because even though he was unable to work in July and had no income, his employer paid him for the work he performed in June on a check dated in July and that amounted to $2.00 more than the allowable income to qualify for aid.
The case worker told him to apply again since now that it was August, he had no income at all. The denial letter for that application arrived almost immediately stating he was not eligible for state aid.
Someone told me to apply for the county hospital’s charity care. They gave us an appointment for late September, as that was the earliest date available.
After a really bad night I convinced my son to again go to the emergency room at the county hospital. This time the ER doctor examined him and said “this has to be dealt with immediately or you are going to end up with major complications”. I explained all that we had been doing in trying to get an oncologist to see him, applying for state aid and the clinic’s charity care and that we had an appointment next month for the county’s charity care. She said his condition couldn’t wait and proceeded to make an appointment for him with an ENT doctor at the county clinic for the following week.
Once the ENT physician saw my son, he arranged for an appointment with an oncologist who ordered a PET scan that showed my son’s cancer was rapidly spreading and was in his neck, head and throat with another mass in his lung. The county approved him for their charity care program and his oncologist prescribed six months of chemotherapy. After the first chemo session, the mass in his neck started to shrink. Within a few weeks he could eat and talk again and the pain was diminishing. After the second chemo session, he was able to stop all pain medications. For months he suffered horribly and nearly died because there is not a good health care system for everyone.
Most people have insurance coverage through their employment. However, if an individual or a breadwinner is unable to work and their employment situation does not offer enough time off for surgery or recovery, those people and/or their family will lose wages and insurance coverage. COBRA is expensive and without an income, difficult to afford. Anyone can be struck by a devastating illness or be involved in a debilitating accident that leaves them unable to work. How can they pay for the health care they need to get back to work? Without the recent changes in the health care law how will a person with a pre-existing condition obtain affordable insurance? I don’t know how people who are gravely ill or in pain get through the maze of assistance programs without help from an advocate. It is a cumbersome, horrible process.*
Victor, Oklahoma City, OK
Victor’s son isn’t alone. In 2011, 48 million Americans were uninsured. These Americans put off care and receive fractured care from multiple doctors in the emergency room instead of the immediate dependable care we all deserve. While Victor's son was able to get the care he needed just in time, every 20 minutes an uninsured American dies prematurely due to their lack of insurance.
But it doesn’t have to be this way.
The Affordable Care Act has begun to make a positive impact on the uninsured, underinsured, and even the insured. Victor's son won't be denied insurance due to his pre-existing condition and may qualify for either the Medicaid extension or the subsidies to help pay for coverage. You can find out more here.
Because even one story like Victor’s is one too many.
*This and all the stories we share are stories collected by doctors and medical students from people in their communities over the past year during their efforts to educate people about the Affordable Care Act.
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