Shutdown snags hope for cure

1.    Horswell, Cindy. (2013, October 20).  Medicine:  Shutdown snags hope for cure.  Houston Chronicle, B3/B5.

2.    Category of problem:  Health

3.    Level of problem:  National level

4.    The article concerns:  Research into a cure for a degenerative nerve disease known as Giant Axonal Neuropathy has been delayed due to the government shutdown.

5.    Why is this important to families / individuals OR how does it affect individuals / families?

a.    Giant Axonal Neuropathy affects only about 70 people worldwide.  But, a potential cure may be on the way if human trials can be approved whereby a therapeutic gene is injected into the fluid of a spinal cord.  And, the family of a Bellaire, Texas teen and his young sister are anxiously awaiting that approval.

6.    What are your views on the issue / policy?

a.    Giant Axonal Neuropathy (GAN) is a very rare neurological disease characterized by awkwardness, muscle weakness and curly hair.  Both parents must carry the gene for it to be passed on to their children.  Few people who have the disorder live past 20 years old.  Human medical trials can be dangerous, but when a person is not expected to live very long because of the syndrome, especially one as exceptional as GAN, then the hopes of a family hinge on the possibility of a cure even if it means a family member is the test subject.  Preliminary studies have indicated a good chance for a cure, and work done with mice has proven relatively successful.  But, this is not all about GAN.  It is as much about the failings of a government hell bent on providing as much anguish as possible to families through the bureaucracy of its own system.  The Bellaire family has been waiting since last December to get clearance from the National Institutes of Health for the human clinical trial approval, and, now, are forced to wait even longer because of the government shutdown.  Surely, similar situations exist in medical research, social programs, defense preparedness and others as a result of the shutdown, too.  The childlike antics of the Democrats, especially the President, and the ineptness of the Republicans to stand their ground on a bad law have caused heartaches with their constituents that they either cannot see or do not care to understand.  While people wait for something that could provide a prospective ‘miracle cure’ for their children, the government – all three branches – act like spoiled kids, and impede the progress of a prospective treatment that could save those children.  It is no wonder that the American people are getting fed up with anything coming out of Washington, DC.