Health Care Story of the Week - 10/28/09

Julie is a 40 year-old mother of 3 in Jackson, Tennessee. In 2005, Julie was in a car accident that left her paralyzed from the neck down. She has a tracheotomy and requires a ventilator to breathe. Nevertheless, she is able to raise her children, attend church, and remain active in the community because of the nurses that TennCare provides for her at home. Now, TennCare is telling her that she will lose her nurses, because it is cheaper to care for her in a nursing home that is almost 75 miles away.

After Julie’s accident and rehabilitation, she was transferred to a nursing home. Unfortunately, her needs were so persistent that the nursing home was unable to provide enough one-on-one care for her. She would frequently come down with pneumonia or develop bedsores. She spent several years of her life bouncing back and forth between nursing homes across the state that could not adequately care for her and hospitals that treated her when she got sick due to lack of care. On several occasions she lost her spot at a nursing home because her recovery in the hospital lasted so long.

In April of this year, she moved home with 24/7 private duty nursing services. Since then, her health has improved, she has not been hospitalized for avoidable illnesses, and she has spent time with her family every day. She lives with her mother, and her sons live with her husband in their old house. Her sons frequently spend the night at their grandmother’s so they can be with their mother, and she is able to help them with their homework after school and see them almost every day.

Recently, Julie was told that TennCare would reduce her nursing hours. TennCare rules say that they will not pay more for nursing than a nursing home would cost. This is called the “least-costly adequate alternative” clause of Tennessee’s medical necessity definition. Julie was also told that she only qualified for TennCare originally because she was institutionalized. Now that she has moved home, TennCare says that she no longer qualifies under that category or any other. Julie used to have private primary insurance, but she reached her lifetime benefit earlier this year and lost it.

Julie currently has a pro bono attorney helping her appeal both issues. She recently had her hearing about keeping her nursing hours. Her doctors and nurses testified that a nursing home would not be a safe place for her to live. Her eligibility hearing will be in November. Julie would be eligible under the Spend Down category, which Tennessee is obligated to keep open due to the state’s acceptance of federal stimulus money. However, this category remains closed. Julie’s story is a perfect example of how gaps in the health care system can tear apart families.

Health Care Story of the Week - 10/21/09

Rylee Sandlin of Nashville is only eight years old, but she already faces health insurance barriers that threaten to shape her life for years to come.

Rylee is fortunate to have health coverage under her mother’s insurance plan. But like so many other parents, the Sandlins have found that even “good” coverage like theirs does not really protect a child with costly health care needs.

Rylee has autism. She has had a difficult, frustrating struggle to develop communication abilities that come effortlessly to most children. But with determination, and the aid of her parents and professional speech therapy, Rylee has come a long way.

She still has a long way to go, though, to develop the skills needed to achieve independence and to fully enjoy relationships with other people. Therapy, which costs $150 per session, remains essential, but Rylee’s insurance won’t cover it. The Sandlins have spent nearly $50,000 paying for the therapy themselves, but now they have exhausted their resources.

It is heartbreaking for the family to watch Rylee losing ground, knowing that it does not have to be that way. “There is nothing harder in this world than to see that your child is suffering, and to know that there is something available to help, but to not be able to provide it for them,” says Keely Sandlin, Rylee’s mom. “We just want for Rylee what every parent wants for their child. It is plain wrong that, even with two parents with decent incomes and ‘good’ insurance, children like Rylee should have to go without. Surely, in America, we can do better than that.”

Health Care Story of the Week - 10/14/09

Shana Atchley, a beautiful young woman from Lebanon, Tennessee, represents the sort of medical miracles that America’s dedicated doctors and nurses perform every day. But now her life is in danger, and she embodies the tragic failures of a health insurance system that so often defeats the best efforts of our medical professionals.

When Shana was born with half of her heart missing, doctors did not think she would make it through the night. Thanks to extraordinary care, she survived. But then, at age five, her immune system shut down and she became very sick. “She was placed on the Heart Transplant list but we were informed that she would probably die waiting,” said Penny Shoemake, Shana’s mom. “Well lo and behold, our prayers had been answered, and two days after getting placed on the transplant list, a heart was available,” she said.

Since age 8, Shana has undergone four bouts of cancer and chemotherapy. The last bout of cancer, during her senior year of high school, was the worst. “She was deathly sick and in and out of the emergency room many times over the course of her treatment,” said Ms. Shoemake. But Shana never stopped fighting, and the treatment worked. Last April, Shana attended her senior prom. A few months later, she graduated from high school with a straight-A report card.

The cancers are caused by the anti-rejection medicine that Shana needs to take to live. Without the medicine, her body would attack the transplanted heart. Shana’s doctors say the anti-rejection medicine will continue to cause her to get cancer.

Shana started college this fall, and works part-time at a restaurant. Until recently, she was insured by TennCare. On September 17, 2009, Shana was cut from TennCare due to the lifting of the Daniels injunction. Now, she is totally uninsured.

“I don’t understand how TennCare can take away coverage on someone that needs it,” said Ms. Shoemake. “Our family does not make enough to pay for her $500 per month medication or her specialists and all the tests that are involved to keep a person alive who has had a transplant of any kind.”

“Considering all that this child has been through, she is an inspiration to me because she never gives up no matter how hard it gets,” said Ms. Shoemake. “I am asking that they let my daughter have health coverage in order to live a more healthy and abundant life.”

The current health care system, with its gaps and barriers, threatens to undo all the good work of Shana’s caregivers, and to defeat her own courageous efforts, by denying the preventive care without which she faces certain death. For Shana, her mother, and her Lebanon community, an investment in her well-being would pay dividends for years to come. Without reform, the present insurance system will rob us all of everything that Shana – and many other inspiring young Americans like her – has to give.

Health Care Story of the Week - 10/8/09

Every week we post a health care story, and this week we share three! Some of these stories were shared at a rally held this week in front of the Blue Cross/ Blue Shield office in Nashville. TJC is partnering with other non-profits to show how the current system is failing many Americans, and why reform is urgently needed. Among the flaws that need to be fixed are the lack of coverage for people with serious health problems and the un-affordability of coverage for many small businesses and working families. Here are the stories of three of our fellow Tennesseans:


Mark runs a sawmill business in McMinnville. The insurance company has upped the price tag on his employees’ health insurance by 100% since 2001, putting health care among the company’s top expenses. “I don’t want to drop their insurance, because they’re my friends. I grew up with them,” he says. Mark is in a very difficult position; he must choose to either put more of an economic burden on his workers or drop their insurance to save the business and their jobs.

Beth of Blountville is 26 and has a rare, but treatable vascular disease. Since she had to quit her job as a general manager at a restaurant in order to manage her illness, she lost her employer-sponsored health insurance. No private health insurance company will touch her and she is not eligible for Medicaid. With her medical bills totaling six figures, Beth’s only hope is a public option.


Earl, 54, of Dickson received a successful heart transplant 12 years ago. Medicaid saved his life when private insurers denied him coverage. Now, he’s being dropped from Medicaid. Earl cannot afford the daily medications that keep his heart beating and relies on a spotty safety net to stay alive.

If you want to attend future rallies and forums in support of health care reform, be sure to visit our Facebook page.

Dean Andrews, who contributed to this piece, is a TJC intern, focusing on legal research and public information.