Knocking on Heaven's Door
This is my column that will appear in the newspaper this week. It is dedicated to my friends who have died from PPH.
Knocking on Heaven's Door
"Its getting dark, too dark too see.
I feel I'm knocking on heaven's door."
-Bob Dylan (Warren Zevon)
Although "Knocking on Heaven's Door" is a classic Bob Dylan song, I relate it to Warren Zevon.
When Zevon found he had inoperable lung cancer, he gathered his friends and his strength to put out a last album, "The Wind." "Knocking on Heaven's Door" was his goodbye note to the world.
Last week, one of my middle age clients died. I was stunned since she seemed healthy a few days before.
It was not a complete shock as she had Primary Pulmonary Hypertension (PPH). The life expectancy for someone with PPH is about four years.
We were very different people. I am an upper income, white guy in central Kentucky. She was a poor, African-American, woman in a large urban city.
We had a common bond. We had both taken the same prescription diet drug. It killed her. I am still here.
Every time I meet someone with PPH, I know I could be in their shoes.
The book, "Dispensing With The Truth," by Alicia Mundy gives the history of diet drugs like Phen-Fen and Redux. Mundy describes how greed and government incompetence allowed drug companies to market products that kill people.
Few people knew that diet drugs could cause PPH. I did. My doctor and I carefully studied the drug company and FDA research which said one in a million people would get PPH.
With the odds at a million to one, I took the drug. In realty, the odds of death were much, much higher.
It is hard to know the true number of people who die from PPH. It is rare and difficult to diagnose, so many die without knowing the cause. Most doctors just don't know what to look for. Many people who die from PPH are simply written off as fat people who had heart attacks.
A now deceased friend went to 18 doctors before she found one who recognized the disease. She knew she was ill and finally found a doctor who recognized PPH.
The drugs have been off the market for years but new cases of PPH keep showing up. I live in fear the medicine I took years ago will kill me.
In my role as a structured settlement and financial consultant, I've gone around the country counseling people who have PPH, or the families of people who died from PPH.
I bond with PPH victims since I could have been in their shoes. I may still be.
Unless a cure is found, there is little chance that people with PPH will live to an old age.
I help the people coordinate finances, insurance and government benefits but my real job is the toughest. Getting them to think about what happens to their families after they die.
When they knock on heaven's door, their earthly finances need to be in place.
Since PPH is not a well known disease, it does not get the research focus that other diseases get.
Pharmaceutical companies should be forced to spend as much money curing the disease as they did marketing the diet pills. If they sold $50 billion worth of diet drugs, they need to put $50 billion into PPH research.
If a pill can cause the disease, maybe another pill can cure it.
The federal government told us the drugs were safe when they were not. Perhaps the government should foot the bill to repair the damage.
People are dying because of their mistake.
The Pulmonary Hypertension Association is working for a cure and offers support to those with the disease.
You can check out their web site (www.phassociation.org). Please give a donation or volunteer to help. Tell them I sent you and plan to send many more.
I'm tired of watching my friends die. I also don't want to die myself.
I show no symptoms of PPH but I never know when they could pop up.
Good people are dying a painful death because of greed and a government screw up. It has to stop.
Unless a cure is found, the knock on heaven's door could be mine.
Don McNay is President of McNay Settlement Group and has helped many PPH patients with their finances. You can write to him at email@example.com or read other things he has written at www.donmcnay.com
You can learn more about Pulmonary Hypertension from the:
Pulmonary Hypertension Association
850 Sligo Ave, Suite 800
Silver Spring, MD 20910