This is the story about what is happening to a friend of mine. His name is Patrick, and he is 52-years old. He is a true gentleman, as kind and generous as they come. He would give his coat or lunch to you, if your need was greater than his own. As a young man, thirty years ago, he held a high security clearance, which enabled him to be assigned to repair and maintain the computers in the Pentagon, White House, and National Institutes of Health. From that job, he has a private employer retirement fund, which is inaccessible until retirement age. The account has no clause for early disbursement for those disabled, facing a life-threatening illness. His entire adult life has been spent repairing computers.
It is enormously frustrating, and terribly frightening, to try to access healthcare when one has no medical insurance. Most people do not know that everyone (except those with end-stage renal failure) who becomes 100% disabled, prior to retirement age, is excluded from receiving Medicare healthcare coverage for the first 24 months after they become 100% disabled!
You will receive your Social Security disability monthly benefit payments, but no Medicare healthcare coverage. They count on a certain percentage of folks dying during the 24-month exclusionary period, so they end up only having to provide Medicare to the ones that manage to survive. For Patrick this situation is almost certainly a death sentence.
Stories like the one below, describing Patrick’s illness, are becoming unconscionably common.
On 15 January 2010, Patrick, having been admitted to the hospital the night before when the pain in his chest became unbearable, received the news that he had malignant, cancer of the Esophagus.
The news was delivered by a visibly distraught gastroenterologist, who had been called at 10:30 P.M. the night before, by an ER doctor with a request that he come the next day to “scope the throat” of a patient.
After finishing the procedure, the gastroenterologist went to talk with Patrick and diagnose his illness. He shared that he felt deeply disturbed that Patrick had not been diagnosed “a year earlier” during any of his previous ER visits, when the cancer was almost certainly curable.
Patrick told the doctor that it was a miracle that he had been called in, at all, to do the endoscopy. The night before, the ER doctor had told Patrick it was “not an emergency” to have a tumor in his chest, and that he was to be sent home as soon as they were able to bring his blood pressure under control. As it happened, hearing this very cold and uncaring statement probably had a lot to do with Patrick’s blood pressure remaining high, which resulted in him being admitted to the hospital.
Exactly one week earlier, on 7 January, Patrick had gone to the ER, the 6th visit in the past year and a half, for “pain in his chest when swallowing”. An EKG of his heart confirmed the pain was not due to any heart problem, so they were planning on discharging him to go home, saying he must be suffering from acid reflux. The ER doctor decided at the last minute to do a CT-scan of Patrick’s chest, to compare to one that had been done 13-months earlier in December 2008.
The scan revealed a tumor the size of an apple, in his chest, which was most likely cancerous. It appeared to be completely encircling the outside of his esophagus and squeezing it shut. The size of the tumor was touching both lungs, pushing into the pericardial sac, and also crushing his windpipe (trachea) against the back of his breastbone.
The ER doctor told Patrick he needed to have an Endoscopy performed on his Esophagus “right away”. He also told Patrick to come back to the ER in a week if he was unable to get this test done, because the size and placement of the tumor was life threatening.
After listening to the whole story, the gastroenterologist, knowing Patrick had no health insurance coverage or primary care doctor, said he was going to personally refer Patrick’s case to the best Oncologist/Radiologist team in Austin, which he did. These three doctors prove there ARE angels among us.
Patrick underwent a very aggressive regiment of chemotherapy and radiation, from the beginning of February to the end of May. His body was ravaged by the toxicity of the treatments and he almost died on more than one occasion. During treatment he was left so weak he often had to hold onto the wall just to get from one room to another at home. Even now, several months after completing treatment, his white and red blood cell counts remain below normal.
The next step in the “standard-of-care” treatment of esophageal cancer is surgery. He has a 50-percent chance of living 5-years or more, if he has the tumor in his chest removed, now that the chemo and radiation have shrunk the size to where it is operable. He has only an 11-percent chance of reaching the 5-year survival mark if the surgery is not performed.
Right now he needs his throat scoped again to check the inside condition of his esophagus and to biopsy the tumor ($2,200), and, in a month he needs another PET scan ($4000) to see if the tumor has any remaining active cancer cells. These tests will help determine if the surgery must be done right away, or if it can be put off for a few more months to allow Patrick’s body to heal, and for him to regain some strength.
Between the disease and the after affects of treatment, Patrick is faced with new health problems.
At least half the folks with esophageal cancer die from malnutrition. Patrick suffers from nausea everyday that makes him not want to eat. He has a feeding tube (a PEG) inserted through his abdominal wall directly into his stomach, to receive liquid nutritional supplements. The PEG tube is hooked to a delivery bag, which is connected to an electronic pump, both of which are carried around with him in a special backpack. This setup allows two ounces per hour of nutritional supplement to be delivered, for up to 18-hours at a time. He needs 4 to 7 cans of liquid nutrition a day, depending on how badly the nausea interferes with his ability to eat food by mouth, and keep it down. A 24-can case of the liquid nutritional supplement costs $90, and was paid for by Medicaid, as was the monthly rental ($201) of the electronic pump and all the related supplies, such as the delivery bags and tubing.
A PICC line inserted into a vein to keep it open in his upper arm was used to deliver the chemo drugs around the clock. A blood clot formed at the site, and the PICC line had to be moved to his other arm. In order to dissolve the blood clot, Patrick has to have two shots a day for six to nine months, of a drug that costs $1,000 a day. In addition, he must take nine prescription medications daily, excluding any pain meds.
As if Patrick did not already have enough serious issues with which to contend, he is now confronting a new, very serious, one. He lost all Medicaid healthcare coverage (even for his medications) on 31 July.
It seems absolutely ludicrous for this to occur, right? One might ask, “What went wrong?” or, “Who dropped the ball?” This is actually the way the “system” is designed to work, or not work, as the case may be.
Since Patrick lives in a part of Austin that is in Williamson County, in January when he could no longer work and his illness was diagnosed, he applied, and was approved, for WILCO. This is the medically indigent healthcare program, which serves poor people who have no health insurance coverage, no assets, and no financial means to pay for health care. WILCO has a payout cap of $30,000 per person per year, which is the same benefit amount as in 1972, the year the program was first implemented. The cost of the diagnostic tests and procedures exhausted the WILCO payout cap for Patrick, even before treatment began on 9 February.
Also back in January, Patrick applied for Social Security disability benefits. Cancer of the esophagus is on the list of diseases that are so serious, one is automatically qualified, upon verification of diagnosis, for the designation of 100-percent disabled. He also applied for SSI benefits at the same time, which would provide him with a very small, monthly benefit amount during an automatically imposed, 5-month exclusionary period. This exclusionary period is imposed for the five months between the time the Social Security Administration makes a determination one is 100-percent disabled and the month one would receive their first monthly disability check.
When Patrick applied to the Social Security Administration, he requested an expedited determination, and received notice at the beginning of March that he was eligible for benefits. First, beginning right away, Patrick would receive SSI payments in the amount of $449, for five months, ending in July. Then, beginning 3 August, Patrick would receive Social Security disability benefit payments in the amount of $2077 per month. The amount of his monthly disability check is based on the amount of money he paid into the Social Security system during all the years he worked.
Patrick was eligible for Medicaid healthcare coverage only because he was receiving SSI, during the 5 months he was waiting for his Social Security disability benefit payments to begin. It should be noted that WILCO was able to get fully reimbursed by Medicaid, once Patrick’s SSI was approved in March.
This is how it works in Texas. If you get Supplemental Security Income (SSI) monthly benefit payments, you get Medicaid healthcare coverage. When you begin to receive Social Security disability (RSDI, formerly known as SSD) monthly benefit payments, your SSI stops and you no longer get Medicaid healthcare coverage. Then, you have to try to stay alive for 24-months with NO access to healthcare coverage, not even for medications, beyond what you can pay for yourself, before you are eligible for Medicare healthcare coverage.
For Patrick, this means he has no way to keep a roof over his head (he lives in a rented apartment) and pay for just SOME of his prescription medications. There is no money (or funding from any source) to pay for lab work to monitor his blood counts, diagnostic tests such as X-rays, CT-scans, or PET scans to monitor any progression of his cancer, or office visits to the doctors providing his care.
One might ask, “What about re-applying for WILCO, since they got reimbursed by Medicaid?”
Oh, yeah, the amount of his disability monthly payment is too high for him to qualify.
Members of the general public (and apparently, members of the Texas Legislature) THINK there is a safety net of healthcare services for those in our communities that are in dire need, but there is not. There is only a mere illusion of a safety net -- that proves to be "too little, too late" to really help anyone faced with a life-threatening illness.
This really is a VERY sad story, isn't it? But there is one part that makes it absolutely horrendous. And, it is even worse than booting him off of Medicaid, or excluding him from receiving Medicare for the first 2-years after becoming disabled. Patrick went to the same ER for over a year with pain in his chest while swallowing. And, because he had no health insurance coverage, they did not scope his throat while the cancer was a lesion the size of a pinto bean, still contained inside his esophagus, and CURABLE.
We all know we should take life one day at a time, and not take for granted all the little blessings that occur in our lives. We have a choice, while Patrick does not. He is robbed of having the time and energy to marvel at a sunset or stop and smell the roses. The daily burden of shouldering his pain and suffering is staggering, and yet, is seen only by those few who come close. It is a certainty that if he has a tomorrow, it will be filled with fighting nausea, exhaustion, and pain, struggling with feeding tubes, trying to swallow pills, and tolerate injections. And yet, if you meet him in passing, he never lets on that he has any challenges at all.
There are untold numbers of others, who have no money and no health insurance coverage, in every community struggling with the same burdens of battling cancer as Patrick. They put up a valiant fight to have the opportunity for one more year, month, or week in which to see a loved one smile, get a warm hug, watch a good movie, play a game of chess, or go hear a favorite band perform. We should be cheering them on, encouraging every little success, and doing as much as we can to help ease their pain. But we don’t.
Instead, we have healthcare laws and regulations that result directly in increasing their pain, while simultaneously pushing them closer to their death. How do we change this? Someone please tell me.
Who among us thinks it okay that people like Patrick with no healthcare insurance are sent home from the hospital without receiving the diagnostic test or care they need?
Did you know there is no remedy, or appeal available, to restore Medicaid healthcare coverage to Patrick, or to remove the 24-month exclusion that prevents him from accessing Medicare healthcare coverage?
Who decided Medicaid benefits should not continue up until the time Medicare benefits are activated, to cover the medical needs of a person battling cancer (or any other disabled person)?
I tell (or, write) the story of what is happening to Patrick to as many people as I can, for a reason. Nothing will change for the better if we do not talk about it, and make access to healthcare the topic of conversations with our families, friends, colleagues, neighbors, and politicians.
I ask myself every day, “What can I do to bring about change that will benefit Patrick in his battle against cancer?”
“Is there anything you can do?”
“What can we do together?”
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