Tuesday, May 26, 2009

Do You Understand?

I really need some help understanding a few things. I guess I'm just not intelligent enough the figure them out on my own. Maybe the problem is that I am not a doctor. I'm only a father who came very close to losing a son he loves very much, one who has watched the suffering of too many children fighting cancer. I would really appreciate it if someone could give me some answers in terms that I can understand.

Seth Harris needs the drug Defibrotide. His doctors spent weeks unsuccessfully trying to find the drug, as Seth's condition deteriorated. Finally Seth's parents ask other parents to help. They found the drug by calling the manufacturer. What was so hard about that? Do his doctors not know the manufacturer of the drugs.

Rachel Tippie was told by her doctors that all options were gone. They did a world wide search, and could find no clinical trials. But when her mother called the American Cancer Society, they told her of 12 current trials, and which hospitals were participating. Rachel is now at one of those hospitals, improving quickly. So what was so hard about that? Have her doctors ever heard of the American Cancer Society? Where did the doctors search?

Doctors told Sinjin Andrukates that his last option had been used, and he needed to accept that his time on earth would soon be over. But Sinjin's mom called around, and found another option. The doctors said it would not work, but Sinjin said they were wrong. That was a year ago, and Sinjin is now in remission. What was so hard? Why could the family find treatments when the doctors could not?

Tyler needed the drug Rituxinab. It has been called a miracle drug for Burkitt's. But our doctors said it was unavailable. There were no open clinical trials for stage IV Burkitt's. But when I called CureSearch, they gave me 9 open trials. I then called five other hospitals, and they all were participating in the trials. Why was that so hard? I assume our doctor knows about CureSearch, since he is listed as a member on their board. Did he just lose their phone number?

Mason McLeod was blocked from treatments by his insurance company. The doctors did everything in their power, but could not change the decision of the insurance company. However calls from the family, friends, and supported got the decision reversed in one day. Why was that so hard? What could friends explain that doctors could not?

There many more stories. Why do some doctors seem to close doors, while other are willing to find open doors. Why do some just trust the system, while others search wider for better options. Why are some so willing to give up, while others fight to the end.

Why is it that sometimes "no available trials" really means "None we are participating in". "The drug is unavailable" really means "We will not pay for it". "No remaining options" really means "None available at this hospital". "This is the standard protocol at all hospitals" really means "All hospitals that agree with us." "That will not work" really means "We are unwilling to try".


Maybe it's more complicated than it sounds. Maybe I'm just not smart enough to understand.


Lori said...

Guess I am not smart enough to understand either. Thanks for continuing to share your insights.

Anonymous said...

Add me to the "not smart enough" group also...cause I do not get it either.