Discoveries in the World of Cleft Palates
In 2001 research scientists in England isolated the gene which is responsible for allowing cleft palates to occur.
In 2003 these same researchers, at the same time as French researchers made the same find, discovered that a certain protein within this gene was missing which was needed to direct the cleft area to close.
In many areas of the world the rate of children born with cleft palates is 1 in 500 and in a few areas it is 1 in 600. The leading thought of the cause of cleft palates was malnutrition and alcoholism on the part of the parents. The researchers could see genetic patterns emerging but were not certain.
Poor Nutrition and Alcohol seem to play apart in the outcome but they are only contributing factors.
Now Cleft Palates are not a glamorous illness or abnormality. As a matter of fact in the US it is extremely hard to get a good fundraiser going to make the necessary repairs to the facial structures let alone the learning and counseling needs of the individual. Seems like folks would rather say “tut, tut,” you did not eat well enough or drank too much in your family tree so figure this out and take your own care – it is in your family tree.
“You can always sue for repairs.”
Yes, yes, I know in nearly every state the original “closure” surgery of the facial cleft is usually done for free, when you can get the child in for surgery. No insurance company covers the closure, but most states have a fund to cover the closure so that the infant will not starve to death. The rest of the repairs are up to parents and families to get taken care of as best they are able.
If you wish to pick a particular surgeon to do the facial repair work, well you must pay individually for that request.
After you have spent so much money on repairs and assistance, it is most exciting to see that researchers in other countries are pursuing new understanding. How exciting for your child to think in the near future researchers in England and France will be able to find a way to manipulate that missing protein in that gene and make the earth a cleft free zone. My child was ecstatic – sign her up right now for gene therapy – because this is truly a great thing.
In the US the fundraising focus has been on raising money to send skilled surgeons around the world to do closure surgeries for free for the world’s poorest children.
Because Cleft palates are not glamorous abnormalities and in the US we must fund raise for research for drugs , procedures, and development; folks here would rather the individuals who are wealthy enough pay the full price for the repairs. It is no surprise to me that in the last three weeks of research on this subject all of the new information is coming from countries with socialized medicine. Researchers get bonus pay for delving into problems just such as this.
I have spent this past week writing to my public officials, my elected officials and research facilities all over the country. I have written to the research facilities in England and France to thank them personally for their tremendous effort on behalf of children. I dashed off a quick note to our local paper for recently raising awareness once again.
I will also send a letter to the huge Smile Fundraising group to let them know about the research and the results so when they send all these doctors and medical people around the globe there might be a preventative solution at hand. I know they will just start harassing me with more fund raising literature but I think at least one person on staff should know what I know.
I have also written to the Bill and Melinda Gates Foundation, as they will probably already know about this research and the newest developments and are probably working on solutions right now. They will ask me how my child is doing and they will really want to know.
Without huge amounts of education for the general public, I hold little hope for the health care systems in the US. People just do not want to know about the real problems and costs.
What is your hope for health care in the US? Do you know of other non-glamorous abnormalities that the insurance companies ignore? Have you had to do battle with insurance companies or health care systems for yourself or a family member? How would you get the word out?