For those with a complicated medical diagnosis, state-funded health insurance bodes little practicality. Patients living with rare and chronic disease must schedule visits to multiple specialty clinics and physicians, especially when a primary care provider can no longer administer adequate treatment. A patient’s long-term health is risked when their whole body health care is placed solely in the hands of a general practitioner.

I live with the rare disease, cystinosis. Due to complications from the illness, I received a kidney transplant at the age of 12. Because of transplant complications, I also underwent chemotherapy for B-Cell Lymphoma six months after my mother donated her healthy kidney to me.

I was able to attend and graduate from college with a teaching degree specifically for parochial schools. I tutored a bit in area Christian schools as well as students one-on-one who needed assistance with English and piano specifically. As I began aging with a rare disease, other complications like migraines, muscle wasting, and irritable bowel syndrome became more of a daily challenge.

Up until age 26, my father’s medical insurance assisted in much of my care. Since I continue to live with my father and mother, I have his insurance to depend upon. Without his insurance, I would be solely dependent upon Wisconsin State Medicaid.

Medicaid has been helpful when I have co-payments. In the beginning of 2018 when state care switched to a managed health system, the hospital and clinics that have been treating me since I was 5 years old no longer were able to fill my 5 medical prescriptions because WI state aid was no longer accepted in Minnesota.

Fairview University in Minneapolis, MN is the closest facility that has a genetics department that deals with cystinosis. Madison/Milwaukee area would be an additional 4 hour drive for my mother and me to find care.

According to the National Organization of Rare Diseases, insurance can be obtained through one’s place of work or purchased through the government. Many living with rare diseases can and do work full time jobs in which insurance is provided. There are also those who live with rare disease where a full time job is not an option.

I am one of those living with cystinosis who cannot work a full-time job because of how my body responds to disease progression and medication side effects. If my father did not work at a place that keeps me on his insurance, I would be solely dependent on state managed care.

If I am in this position, there are many others living with rare disease in their adult lives that have need of better insurance options than a managed care program. For the able-bodied, insurance obtained through full time work makes logical sense. State insurance makes sense for able-bodied persons who are not able to work for other reasons at this time in their lives.

But a person diagnosed with a condition which causes life long damage to specific organs and body systems needs multiple medical professionals on their care team. The kinds of medical professionals needed can range anywhere from physical and behavioral therapists to endocrinologists and nephrologists, of course depending on what organs and systems in the body are affected by disease. Patients with progressive health issues travel out of state to receive specialized care in fields such as genetics and cancer clinics.

Little hope is given to patients wanting to lead a better quality of life if their disability restricts them to state funded managed care. If a patient is unemployed, treatments for rare disease are expensive and many times are not affordable under a managed state insurance plan. Many times the pharmacies are limited in dispensing medication requiring a specialty doctor’s scrip and private insurance approval.

The last two years I have been receiving help from third party providers for people who live with cystinosis. The treatment for cystinosis is costly and there are a couple options for adults to get assistance in medication coverage. Websites, like the National Organization for Rare Disease, list resources where persons living with rare disease can find aid in specific drug coverage for their conditions.

Many treatments for rare diseases, however, are not covered because many do not have treatments or cures. Cystinosis has three family organizations one can seek information from as well: Cystinosis Foundation, Cystinosis Research Foundation, and Cystinosis Research Network.

Living with a rare disease as an adult is more complicated than being put on state insurance or finding a job that will cover benefits specific to treatment for one’s disease complications. For many, dependence on third party organizations is their source of hope to prolong daily living with rare symptoms.

When voting the healthcare issue, consider the population of Americans who live with rare disease. Keep third party option funding available.