Tuesday, January 9, 2018
What We Learned From Rhonda
Because her birthday is later this month I am reposting this as a tribute to Rhonda, my niece. Unfortunately the same problems still exist today.
Rhonda was my special niece. Special because she loved everyone unconditionally. I think she knew her time with us was to be short and she did not want to clutter it with negative things.
There are a lot of things to be learned from the brief life of that beautiful little girl. The most important is to spread love. It costs nothing and benefits everything. I know she made us better people for knowing her.
Her illness was a costly thing. I do not know how it is now but at that time transplant surgeries were considered "experimental". My brother and his wife were very young but my brother had excellent health insurance through work.
The problem began when he was informed that the insurance would not cover experimental procedures. It was suggested that they apply to the state for help. The state would not cover experimental procedures. The United Way was the largest charitable organization in the area. They helped many different types of charities including medical charities. But none of them covered experimental procedures.
So my brother worked two full time jobs to help pay for medical expenses. My sister-in-law also found work to help out. And they had a sick child and her younger brother (1 year younger) to take care of. That left very little if any time to be together as a whole family.
As often happens in cases like this their marriage did not survive. You always hear stories about how a tragedy draws a family closer together but statistically more families are destroyed.
A lot of things were covered by insurance. Regular check-ups, a lot of medications, that sort of thing. But Rhonda needed special medications because her little body did not absorb a lot of them. And special medications cost a lot.
Senator Ted Kennedy was coming to our city to have a panel about a national health care system. My brother and sister-in-law were asked to testify and agreed. By this time my niece had been gone for a while so they felt they could handle it.
In preparation they got together with my mother to tally up what they had paid out of pocket for health care. The numbers kept growing and growing. Finally it was decided to just do one year. The numbers were still huge so they went with medications for one year only.
The final total of money that this couple, who were in their early 20's when their 8 year old daughter died, spent on medication for their daughter for one year was more than $25,000. Yes that is twenty five THOUSAND dollars. In the 1980's that was more than most people made all year.
Of course after my niece had her transplant surgery all those organizations that wanted nothing to do with her medical problems before were fighting to be the ones to help her. My brother's medical insurance was there and paid for her needs then.
Senator Kennedy was impressed with their testimony. He listened to other stories of horror dealing with the cost of medical care. Then he said he would try to see to it that others did not have to go through this. Unfortunately he was unsuccessful. But at least he listened.
When I worked as a cashier often senior citizens would bring their prescriptions to me so they could pay for them. Often one prescription for a month's worth of medication would be more than $500 dollars! These people were living on fixed incomes. Some had to choose between buying medication that kept their hearts working and food. Unforgivable!
I read an interview with Christopher Reeve who played Superman in the movies. He had fallen from a horse and was paralyzed. His grandfather was the head of one of our country's largest insurance companies. Christopher Reeve had the very best health insurance available. Within a very short period of time (weeks) his allotment of benefits was consumed. He wondered how people of more modest means could even have hope for medical care.
Most people do not realize that there is a ceiling on the amount of money that health insurance will pay over a lifetime. With a life threatening condition that ceiling can be reached quickly.
A work colleague and dear friend had AIDS. He had been sexually promiscuous thinking it would never happen to him. As his disease progressed he became more and more ill. The treatments for AIDS such as those magical cocktails you hear about cost a lot. His health insurance ran out in no time.
There are federal programs that provide the medications for AIDS victims. But they only accept patients who are too ill to work and take care of themselves. Once they are better (and the cocktails do work to make them better) and can go back to work the medications are stopped.
My friend got tired of the sick/better roller coaster and decided he would no longer take part in the government program because it was only temporary. He died only months later. He was only 35 years old and looked at least 80 when he died.
Most medications are fairly inexpensive to produce. What we pay for is research. Research is necessary to find more and better medicines.
But I cannot for the life of me understand how we can let people die because they cannot afford medicine that they need to keep them alive. I am not talking about extreme medicines only. Insulin for diabetics, medication for heart patients, oxygen and medication for emphysema sufferers... I think you get the idea.
We are inventing better mouse traps. We travel to outer space. We fund wars to kill people. Can't we find some way to help people be healthy?