Health care is struggle for family

Like millions of uninsured Americans, Stephen and Nicole Householder find their precious, Landin, at the mercy of the state.

An Army veteran, who served in the Iraq war and in Afghanistan, Stephen never expected his family to be among the numbers of uninsured Americans. "I think it is sad how I could die for this country and I can't get insurance for myself and my family," he said.

After serving the United States military for four years, Stephen went to work for a small independently owned business. "We have looked into insurance but couldn't afford it," said Nicole.

Relying on Medicaid has left the Householders disillusioned. The informational website about Medicaid www.cms.hhs.gov states, "Good health is important to everyone. If you can't afford to pay for medical care right now, Medicaid can make it possible for you to get the care that you need so that you can get healthy - and stay health." The website explains Medicaid is a state administered program where each state sets its own guidelines concerning eligibility and services.

"I thought this country was supposed to be one nation, not 50 states," said Stephen after learning the Governor's office couldn't help citing financial reasons.

Landin has been denied twice for Medicaid to cover the cost of the specialist with denials stating the reason as "medical records and physician review does not support out of state medical treatment."

The Householders find themselves in a position where despite repeated missteps in treatment by local physicians and lack of knowledge due to the rarity of the disease, Langerhans cell histiocytosis (LCH), they are denied treatment from a specialist because the doctor is located in Tennessee.

"Would you want a gynecologist doing heart surgery on you? That is exactly how I felt when I was told Medicaid is denying the request to see a specialist. What if it was your child? You would want the best for your child and I can't get it," said Nicole. "He's a 13 month old baby. He can't tell me momma I am hurting today. It's ridiculous, they should help. He's not another statistic: He's my baby and as a parent it scares me. My biggest worry is that if something happens, then his life is in their hands. I feel like mine have been tied behind my back," said Householder as tears streamed down her face.

Approximately 1 in 200,000 children in the U.S. are born each year with histiocytosis, reports www.histio.org. The illness is so rare limited research into its cause and treatment have been conducted. It is referred to as an "orphan disease" meaning it strikes too few people to generate government-supported research.

"I think it is crucial they (patients diagnosed with LCH) see a physician who is experienced in this disease," said Jeff Toughill, president of the Histiocytosis Association of America. He founded the organization over 24 and a half years ago after receiving a diagnosis of histiocytosis for his 3 month old daughter. While he is not a physician he has championed increased awareness in the medical profession, stayed abreast of current research and provides resources for patients with LCH.

"Because it is a rare disease it is important to see a doctor who has access to cutting edge information. It can make the difference between life and death and chronic lifelong problems or remission. The right physician can make a difference as some physicians never see cases their entire careers, some may see one or two and there are others who see several a week. If it is my child I want them to see a doctor who is actively involved in research and sees other cases," said Toughill. "It is important to know the extent of involvement in any particular patient and to receive an accurate diagnosis. You don't want to over treat with chemotherapy. Each individual case needs to be assessed and a treatment plan devised based on experience and knowledge. The key is early diagnosis and early treatment with proper treatment."

Medicaid's denial of the Householders's claim leaves Landin's treatment course unknown. The family will appeal, but in the meantime, Landin's health continues to decline.

"We have no problem being treated here, but we need to know he is being properly treated. Not just any oncologist can come up with a treatment plan because they are not knowledgeable about this rare disease. We have been given 3 different treatment plans in 4 days from doctors here and a chemo port was put in before all tests were complete. The doctor then came back and said the port was not needed," said Nicole. "The specialist said this is because they don't really know what they are dealing with."

In addition to a premature chemo port, Landin has undergone extensive tests only to find inconclusive results. "A hospital here has already tried to diagnose and treat Landin. The tests were not thorough enough and Landin was put to sleep two days back to back and was inflicted with pain with no results. There are still two tests that need to be done. One is a GI test where they will take up to 20 biopsies. The specialist said that someone who is familiar with LCH needs to perform this test because they can detect if an area looks like it might have LCH. The second test is a test that only part of the process was done here so the test is invalid. Again the specialist said that if you didn't know about the proper procedures then we are putting Landing through tests that are not giving true results," said Nicole. "Vanderbilt will give us a true diagnosis and treatment plan that will be carried out here in South Carolina."

"I fought to get him diagnosed and I will fight to get him seen," said Nicole Householder. "A momma has to do what she has to do for her child."

The Householders are keeping up; however, the Medicaid denial dealt a devastating blow to their finances. "We will do whatever it takes for him to get the care he needs," agreed Stephen and Nicole.

The entire family is grateful to everyone who has been keeping them in their thoughts and prayers. Anyone interested in learning more about the disease or offering their prayers and support may contact the family at landinsmiracle@hotmail.com. A website has been established at www.caringbridge.org/visit/landinsmiracle and extensive information about LCH may be found at www.histio.org. For those who wish to remain anonymous, an account has been set up at Regions Bank in the name of Landin or Nicole Householder. The family may also be reached at P.O. Box 1592, Aiken, S.C. 29802.

"Any money donated to Landin, not used to help pay medical bills will be donated to histiocytosis research so other families won't have to go through this in the future," said Nicole.

The family will start gift wrapping presents at the Aiken Mall, the day after Thanksgiving from 7 a.m. until close and each consecutive Saturday until Christmas. There will also be a bake sale on Friday, Nov. 28 at the mall. Additionally, T-shirts are available for $15 each and plans are underway to hold a dinner with Santa and a walk in order to raise money for research. Landin will also play a prominent part in the Aiken Christmas parade.

"If God lays it on your heart to help us, please do," said Nicole. "Everyday that goes by untreated is a day we lose with him. The sooner he is treated it can spare his life. Our concern is that he get medical attention."