Joe and Cameo's story

This article was written by one of my talented sisters. I've included a link to the website at the bottom of the post.  We're trying to share the story anywhere and everywhere. Every little bit helps. 

Joe and Cameo - soul mates and best friends - find themselves caught in a gap in our dysfunctional healthcare system: unable to afford any insurance and unable to receive any care without it. Joe was recently diagnosed with terminal cancer, but since the diagnosis he has not received any medical treatment outside of a handful of prescriptions and a maze of red tape. (Read the full description for details.)

In late April, Joe spent four days in the local hospital. Now, as his wife Cameo does her best to keep Joe comfortable, they are already having to deal with double-billing errors from the hospital and are anticipating huge bills for the E.R., attending physicians, and diagnostic tests, not to mention all prescriptions and end-of-life expenses, which they are paying entirely out-of-pocket.

Please help us show Joe and Cameo that, even if the healthcare system won't help, they are not alone. We are trying to raise $50,000 to pay outstanding medical bills and help them focus on each other in the little time they have left together. Any contribution you can make is a blessing. Thank you.

Their Story

Waking Up to a Nightmare

On a Sunday afternoon a few weeks ago, Joe Shelley was returning home after a day of riding quads with family and friends through the desert mountainscape near his home in Kingman, AZ when his arm started aching.  Within an hour he had to pull over to vomit along the side of the road, and the nausea and dry-heaving continued for nearly 10 hours. When his symptoms didn't subside, 50-year-old Joe agreed to let his wife, Cameo, take him to the emergency room where the agony continued and physicians told the couple he would need to be admitted to the hospital with an acute case of pneumonia.

Unfortunately it wasn't that simple. Joe remained in the hospital for four days, suffering a series of mild heart attacks and fighting to hang on. By Wednesdaya CAT scan revealed the source of all the trouble: a large mass in Joe's lung was putting pressure on his heart. Cancer. A bronchoscopy was ordered to explore further and collect tissue samples for biopsy. The prognosis: not good.

What happened next is puzzling. Immediately following the procedure, the oncologist on the case pushed to speed up Joe's release from the hospital, ostensibly so that he could begin treatment with KRMC's associated cancer center. His condition was declared stable and he was sent home that night with a handful of prescriptions.

However, instead of beginning to battle the cancer, Joe and Cameo entered a bureaucratic nightmare.  A week later, they had paid nearly $1000 out-of-pocket for a couple of "discounted" fees for office visits where doctors only confirmed the original diagnosis: Stage 4 Small Cell Lung Cancer - a particularly aggressive, fast-growing cancer. Further than that, they were told, they were on their own. Since Joe had been released from the hospital's care, he could not be readmitted without proof of ability to pay. The medical center was adamant. No treatment could be provided without insurance.

The couple spent days trying to work with doctors and hospital administrators, begging for anyone who could help them begin urgent treatment and work on payment plans later. The social worker at the cancer center stopped returning their calls. Finally one doctor who they had met in the hospital agreed to meet with them and renew the prescriptions Joe had received when he checked out of the hospital. This doctor added another prescription, written out on a the prescription pad just like all the other meds: have the cancer center begin treatment immediately.

Meanwhile, each day Joe found it more difficult to breathe and his strength declined. Cameo stopped discussing their options with him because the topic would send his blood pressure and heart rate to dangerous levels. No one, it seemed, could help.

The Affordable Care Oxymoron

Why weren't they covered? Isn't that what the ACA was all about? Like everyone else, Joe and Cameo were aware of the Obamacare requirements and had even asked around about acquiring coverage. But the only news they heard was bad: coverage for two adult smokers on a private plan would run more than the cost of their mortgage payment. Cameo's salary as a manager of several local gas station / convenience stores put them just over the limit to qualify for any subsidy Friends and colleagues who did enroll told them horror stories about being forced to drive 60+ miles in order to find any in-network doctors and facilities.

But they'd survived without it for this long. Joe had worked over 25 years as a long-distance truck driver, heavy-equipment operator, and mechanic before being laid off three years earlier. Since that time he'd only found temporary work doing odd jobs and helping out friends. Cameo had worked nearly as long as a manager for several gas station / convenience stores. Neither of them had ever been offered health benefits with their employment. When medical needs came up, they paid out of pocket. Even the bills for Joe's back surgery several years before had been meticulously and painstakingly paid off over several years. "We weren't looking for handouts," Cameo said. "We've never taken anything without paying. We just wanted medical care."

At every turn they were running into options that were neither affordable nor very caring. Insurance agents claimed it was impossible to even sell them a private plan outside of the government's open enrollment period. Hospital administrators and social workers would review their situation and offer impossible choices: Joe would qualify for Medicaid if they weren't married. They may be able to qualify for special enrollment if Cameo lost her job. They could move out-of-state to try to trigger an open enrollment situation.

Each time the cost: giving up their marriage, the only income they had, or their home, was judged to be too high. Especially as it became clear that any or all of these sacrifices would not be enough to acquire coverage and begin treatment immediately. They did all they could: beginning an application for SSI benefits with Joe's new diagnosis and were told that an expedited situation may have him covered in six to eight months. They continued to work with the Cancer Center to apply for a private grant that would help cover 25 to 75 percent of costs with little response. And the days continued to pass.

A Short Goodbye

Three weeks ago, when Joe first received the diagnosis, he was philosophic. "I've made some bad choices. I chose to smoke," he acknowledged. But although resigned to an incurable condition, he did have one wish: to live long enough to celebrate Cameo's 40th birthday in October.  "What about your birthday and our 13-year wedding anniversary in January?" Cameo asked. Joe just smiled.

It's been just under a month since that fateful Sundayride. Joe is spending most of his time indoors because the wind and dust outside make it difficult to breathe. He sleeps sitting up to help ease his breathing. Cameo has scheduled limited hours at work in order to spend as much time with him as possible. They test his heart rate and blood pressure frequently and take pains not to discuss things that will agitate them.

Friends from around town and even out-of-state have taken to stopping by to visit. The visitors find the same old Joe: smiling and cracking jokes, alternately scolding and baby-talking the couple's four dachshunds. But his breathing is shallower, his voice tighter, and the hacking cough more painful-sounding now. No one from the medical center has called in days. And October feels like a very long way away.

Update June 4:

It has now been six weeks since Joe was diagnosed with cancer. He has lost much of his strength and is in constant pain. Two days ago Joe started experiencing episodes of severe shaking. A family friend who is a registered nurse with extensive experience caring for terminal patients has explained that this is likely a sign of the cancer moving into Joe's brain. Cameo has started receiving calls from the medical center threatening to turn their account over to collections despite the fact that they have still not been billed for Joe's hospital stay. These calls agitate Joe so much that she has had to keep her phone ringer turned off. The social worker in charge of their grant application will not return calls.

Update June 6: 

My niece set up a lemonade stand and made $100 for the cause. Love her idea and thoughtfulness :)

http://www.youcaring.com/joseph-mel-and-cameo-shelley-364438#.VXEdnVgFNiI.facebook