The State of James Howard

I am not willing to tell James Howard, a brain cancer patient from Texas, that his treatment might not be covered.

Most people have not had the President of the United States stand before a joint session of Congress and a national television audience to defend their healthcare coverage. The story that took James Howard from his job in Sealy, Texas to the First Lady’s box at the State of the Union is both courageous and tragic. But after talking with James about the journey from diagnosis to D.C., this writer learned that the acceptance of his condition and treatment has led him to a new role as a symbol of what is right in the complex new healthcare reform.

James, now 28, moved from Maryland to Texas in 2007. For the last three years, he has worked at Hennessey Performance – an auto shop that “makes fast cars go faster” where his client base includes notable athletes and celebrities from around the world. When he talks about his work, the pride and enthusiasm in his voice is obvious.  James sounds like a guy who can’t wait to go into the office the next day. It is that love of work that would turn out to be one of his biggest strengths.

In late 2009, James began to seek help from his dentist, orthopedist, and ophthalmologist to find out what was causing his increasingly severe headaches. The official diagnosis came on March 17th, 2010, St. Patrick’s Day, when he went to the emergency room.  An MRI revealed the cause:  gliomatosis cerebri, a rare and lethal brain tumor. His major insurance carrier determined that his cancer was a pre-existing condition and revoked his coverage. Starting that March, James began paying out-of-pocket for his medical bills, including doctor visits, more MRI’s, and $10,000 a week for oral chemotherapy.

While there were some cases of cancer in his family, they were lung malignancies and were attributed to heavy smoking. Like a number of cancer survivors, James has become fluent in the language and history of his particular variation.  He explains it simply and smoothly as if he were describing the tuning of a performance engine, “Most brain tumors are like golf balls,” James states matter-of-factly. “Mine is like an octopus, with tentacles.”

When you search for “gliomatosis cerebri” online, the results aren’t encouraging. Most diagnoses are made during autopsies, and it is a surprisingly small number of cases: fewer than 300 — not enough to offer hope for any clinical trials. James looked on Caring Bridge, a website that connects “people experiencing a significant health challenge to family and friends, making each health journey easier.”  He found three people with the same disease, ages 5, 10, and 13. The information he was gathering offered little help and neither did his lack of insurance coverage.

“Yeah, so that was pretty much the situation,” James said, clearly and firmly as someone who has fully assessed the toughest challenge he has ever faced. It is in this difficult and daunting time that members of his church made sure he would not be going through it alone.

James met with Texas Oncology, and his doctors determined the best treatment was radiation, which would cost $87,000. Again, he would be paying out-of-pocket as none would be covered by his revoked insurance policy.  James agreed to pay cash and Texas Oncology reduced the amount to $17,000. That’s when members of his church, The Waters in Katy (Texas), raised over $15,000 in just 24 hours. “They are incredible,” James says and is convinced that without this help, he would not be alive today. His faith community support is more than just financial, and they continue to help James and his family throughout his treatment. In July 2010, he began an intensive six-week-cycle of radiation that helped slow the growth of his tumor, buying him time.

On July 1st of 2010, the Pre-Existing Condition Insurance Plan, part of the massive healthcare insurance reform passed in March of that year, gave James the hope he needed.  In August, he was covered under the new insurance plan, the first time he had coverage since being dropped by his previous carrier. “It was such a relief,” he says. It was this coverage that made future treatments affordable, something that would have been otherwise impossible.

James, both in his medical condition and his new coverage, is a prime example of someone who the healthcare bill was meant for, the exemplar of the preexisting condition patient. He was interviewed by Reuters and for the first time talked about how he played into the healthcare debate. James was a little upset when the article mentioned that his employer didn’t provide health insurance. “My job is what is keeping me sane,” he said. His company gives him Fridays off for treatment and allows him to work from home whenever needed. He considers his work at Hennessey and the support of coworkers as the needed distraction from the disease.

The Reuters article put James on the national radar screen. While undergoing treatment and working full time at Hennessey Performance, he received a call in August, “My co-worker looks over and says, ‘It’s the White House,’ and I couldn’t believe it.” The official talked with James to confirm the facts of his treatment listed in the article and get an update on his prognosis. This vetting process confirmed James was exactly the kind of person the new law was meant to help.

You get the feeling that James is a good example of the benefits of the new healthcare law because his situation does not play into the philosophical or ideological dogma. Employer mandates and constitutional arguments take a back seat to someone who was given fourteen months to live and was just dropped from his insurance. He was doing everything right: he’d never smoked a cigarette in his life, was enrolled in insurance coverage, and he saw his doctors regularly. Yet he fell victim to one of the most rare and deadly forms of cancer.

The fear and uncertainty this would inevitability cause in anyone stands in very stark contrast to the composed and determined manner in which James explains and accepts his condition. He states clearly how the newly-legislated coverage helped him and is both thankful and eager to let others know about it. “This bill helped me. There’s no arguing that.” James is not someone who is going to be rattled easily, even with the vicious disagreement the legislation engenders. For someone who didn’t lose it when he lost control of his life, he certainly isn’t going to lose it in discussing his coverage.

James continued his treatment, intravenous chemo after the radiation, while looking at surgical options– options that are now covered and affordable. Surgery is the final and best solution, and he continues to learn more about the procedures going forward. Early this January, he received an e-mail from the White House. They again asked for an update on his condition, but this time also asked if he could travel. “I had no idea until, about a week before, that it was for the State of the Union,” he said. He was shocked, excited, and sworn to secrecy about attending. He was allowed to talk about it all of twenty minutes before the official White House press release went out announcing who would be sitting in the First Lady’s box.

James saw himself on television as he waited for his flight in the airport on his way to Washington. It was both unexpected and “pretty cool.” After landing, he joined the other invited guests in the East Wing of the White House to meet with First Lady Michelle Obama and Bo, the family’s dog. James recalls that when he met the other guests, he had doubts about why he, of all people, was invited, “I mean you have Daniel Hernandez (the heroic intern in Congresswoman Gabrielle Giffords’ office) and her surgeon from Arizona and a soldier who had lost both legs in Afghanistan.” While he questioned his place among the other honorees, he does not question what healthcare reform has done for him. “Without that bill, I wouldn’t be alive.”

The group traveled with the Secret Service to the Capitol and up to the First Lady’s box in the House of Representatives Chamber. During the speech, President Obama mentioned James by name and described his treatment. “I was just watching a video of the event with my mom, and I still can’t believe that it really happened,” he says.

In less than a year, he has gone from increasing headache pain, to a brain tumor diagnosis, to community rallying point, to now a face of expanded coverage for pre-existing conditions. All this, while still working for Hennessey, making fast cars go faster.

After the speech, James headed down with the other guests to the Sergeant of Arms Room.  There, he spent a few moments directly meeting with the President and First Lady. “He knew a lot about me and my situation,” James said. “Everyone kept giving me suggestions on what to say, but I knew the only thing I wanted say to the President was thank you.” James was used to meeting celebrities, but this was different. This person knew the coverage crisis he faced. And this person was the President of the United States.

James is currently working with a surgeon and will visit him next month. He is encouraged, but realistic– a firm believer that his positive outlook is directly attributable to his family, friends, his faith, combined with a change in policies brought about by politics. Again, he doesn’t want to get into the weeds and debate. His story is much more powerful standing on it’s own.

While he may have a tough diagnosis, the reason he was picked by the President is evident to anyone who knows his story: the state of James Howard is strong.

Category: Survivors in the News

Tags: brain & spinal cord cancer, CancerForward Survivor in The News, clinical trials, glimatosis cerebri, health insurance, James Heard, Katy, pre-existing condition, President Barack Obama, rare & orphan cancers, Texas, The Waters Church