HCCD Report Mississippi 48353

Lois facilitated/moderated each of the three discussions in our community and will contact you with the summaries of the groups. This is my personal observation.

I attended three discussions—for two I was the host for the sponsoring public library so I did not speak but listened; the third I was able to participate. Each group was different--retirees dominated one; service professionals, including a hospital pediatrics nurse was the second in which I participated; and the third included a health care focus group researcher, pharmaceutical sales person, and former intraocular implant sales person.

Overwhelmingly, the complexity of the cost of health insurance, cost of health care, and availability of insurance seemed to primary concerns. Everyone wants everything for the ones they love; are willing to pay a reasonable amount; do not trust the government to sort out what is a level of minimum care; and certainly are not willing to have the government add even more administrative requirements and costs to any package.

Each person had a story—some exceptional and unlikely to recur; some frightening and unlikely to be prevented. Every one attending wants change. Are there working models in other countries? Will free enterprise have to mean we have 64 different prescription plans to decide among and then still land in a “donut hole” for drugs that we cannot afford?

My story: My girlfriend, Camille, was diagnosed with non-Hodgkins lymphoma at age 46. Single, African-American, working a professional level publishing position, educated at Cornell—she was a consumer of health services and chose treatments and providers very carefully within the HMO she could afford when she could no longer afford COBRA after leaving on disability due to the illness. Simultaneously she was diagnosed, then the diagnosis rescinded, then reinstated, for mycosis fungoides. Still an acceptable candidate for stem cell treatment, she got it at a University. First one didn’t take—Camille was allergic to the gas that is used to clean the lines. She had further allergic reactions, was hospitalized, and recovered after some scary bouts. Had a second stem cell treatment and everything took—everything was going great. She needed help with her prescription drugs (no coverage) and was receiving it through the hospital from the drug companies. The drugs included a common one for thrush—candidiasis which had plagued her a couple times during treatment. 

(She managed to recover from MRSA, though—testament to the care and her own will.) The doctors felt that the thrush was mostly cured—substantially so, and she could choose to continue the drugs for that, or not. The social services representative could not be reached the day she was in for her appointment and needed to get the additional drugs to continue treatment, just to be sure. When reached, the rep couldn’t get an answer after four hours of waiting, which was after the three hours of the appointment, which was on top of the one hour it took to get to the appointment. I offered to pay for the drugs—one of a team of Camille’s friends providing food, transportation, home care for the pic line, and emotional support, I was happy to help in any way. Camille declined not wanting to add any more burden to any of us.

The thrush was not gone; it invaded her lungs. She died within two weeks. The difficulty breathing was dismissed as cold weather and oncoming cold. It took two days in the hospital to diagnose the problem, two days later her heart gave out. Camille died at age 48.

Yes, I believe in personal responsibility. Yes, I believe she could have chosen to let my buy, to accept help, to have gone to the doctor sooner. I understand that in another model—Canada, she might have died waiting to get the initial tests and/or treatments. Or in England, another model, she might not have been able to pay for the additional care and had some other result. And I know that there are many stories—of transplants denied young working Americans, when others on the later cusp of life, get them because of their place in line and health options. Of children who do not get the care they need because their parents don’t understand what they have to do or are unwilling to do what is needed. Of young adults who could take advantage of employer-provided health care with a nominal cost but would rather spend that money on entertainment, or, even simple living expenses. I understand that prevention—education that includes nutrition, physical exercise, and instruction on being a consumer.

It just doesn’t make sense that in this country, when we can do so much, have so much, there are so many without basic care.