PCD Foundation Blog

Patients wanting to participate in NIH-sponsored research now have a resource to help with travel costs.  Angel Flights/Mercy Medical Airlift has established an office at the Office of Rare Diseases in Bethesda, MD to better serve patients participating in research studies (like the PCD study [GDMCC]).

Here are the guidelines:

*Flights must be for research, evaluation or treatment.
*The appointment must already be set prior to calling Angel Flights.
*Flights are primarily for people who are 300-1,000 miles from the
target medical site, but there are occasionally resources for people
traveling longer distances.
*Financial need is considered, but the terms can be flexible.

The contact person at Angel Flights/Mercy Medical Airlift for GDMCC study participants is Marita Eddy.  Here is her phone number: 301-451-9646

Angel Flights/Mercy Medical Airlift also wants us to let our group members know that they accept and greatly appreciate donations of frequent flyer miles for United Airlines.  If you have miles you would like to donate on a different carrier, there are airline miles exchange sites on the Internet.

I received a letter from Genentech/Novartis outlining a new warning about Xolair.  This is an update from the Feb. 2007 FDA alert, which merely encouraged people to fully read the package insert that comes with Xolair.  Here is Genentech’s warning:

“Anaphylaxis, presenting as bronchospasm, hypotension, snycope, urticaria, and/or angioedema of the throat or tongue, has been reported to occur after administration of Xolair.  Anaphylaxis occurred as early as after the first dose of Xolair, but also has occurred beyond 1 year after beginning regularly administered treatment.* Because of the risk of anaphylaxis, patients should be closely observed for an appropriate period of time after Xolar administration, and health care providers administering Xolair should be prepared to manage anaphylaxis that can be life-threatening.**Patients should also be informed of the signs and symptoms of anaphylaxis and instructed to seek immediate medical care should symptoms occur.”

Anaphylactic reactions can be deadly within minutes.  Neither the FDA nor Genentech is providing guidelines for who is at risk, so we have to assume that any user could potentially have an anaphylactic response to Xolair.  If you or your child is currently using this medication, please discuss this warning with your physician.  If you would like copies of the actual letter from Genentech, let me know and I can get them to you.

*This means that because even if you have used Xolair with no problems in the past, you still may experience anaphylaxis at some point.
**This means careful observation after each dose of Xolair

Since 2005, the Genetic Alliance and other patient advocacy groups have been working to get legislation passed that would protect individuals with genetic disorders (and their blood relatives) from discrimination in insurance coverage and in the workplace.  The resulting bill called “GINA” has received broad support from both parties.  The bill (details at link below) has been passed in the House of Representatives.  It looked to be a slam-dunk in the Senate, as well, but Oklahoma Senator Tom Coburn (a physician) has put a hold on the bill meaning that it won’t even be considered for an up or down vote.  Senator Coburn’s office has not provided an explanation for this action yet.  President Bush has already indicated that he will sign this bill into law if it is passed in the Senate.  The only hold-up now is Senator Coburn’s hold.

According to Senator John Kyl (R-AZ), enacting GINA requirements will result in little to no direct cost to taxpayers.  The biggest opponents of this legislation have been the health insurance industry and employer groups who would like to reserve the right to deny costly services to persons with genetic disorders.

Genetic Alliance is requesting that patients impacted by this legislation contact Senator Coburn (if they are from Oklahoma) or contact the Republican leadership in the Senate to request that they persuade Senator Coburn to release the hold.

Here is the bill:
http://rpc.senate.gov/_files/L2GeneticNondisDBJS021605.pdf

Here is Senator Coburn’s legislative aide email (if you live in OK):
courtney_cox at coburn.senate.gov

Senate leadership contacts for non-OK residents:
Trent Lott (R-MS)                  Phone 202.224.6253
Mitch McConnell (R-KY)           Phone 202.224.2541

It seems a bit ridiculous that we have to fight to prevent discrimination due to our genes.  However, the threat of discrimination in the U.S. is real.  Here is an example, the International Classification of Disease (ICD) now in its 10th revision, is used by the majority of the world to categorize disease and to keep medical statistics.  It does this by assigning numerical codes (PCD has not be given a specific code yet, that is a different problem).  In the 10th edition, the ICD distinguished the numerical codes for genetic diseases by putting a letter “V” in front of them.   These so-called “V” codes were great for countries with national health plans where all patients are covered regardless of their condition.  However, in the U.S. where ICD-10 codes are used for private insurance reimbursement, it is feared that V codes will prove to be “handy guide to discrimination” by insurance providers, allowing them to easily deny claims submitted using a  V code.  Please note–this has not happened yet–this is merely an example of why Genetic Alliance, the AMA, and other professional groups have been fighting for GINA for nearly 3 years now.

If you have the ability to make a call or send an email, please consider it.

Michele