Sunday, May 29, 2011

Political/Economic Barriers in Multiple Sclerosis Research

Thankfully, MS is not an epidemic.

Thankfully it is widely recognized as a serious CNS disease.

Thankfully treatments are widely available.

Thankfully doctors recognize MS as a force to be reckoned with and are willing to do battle whenever, however.

Thankfully politicians are somewhat familiar with the havoc MS can wreak on a patient's life and they seem interested in funding research and clinical studies that are helpful to patients.

So, are there any political or economic barriers in MS management?  What are your community members saying?

Do they find easy access to medications?  Are they easily able to get disability when it is needed?  What about assistance devices?

Perhaps you disagree with the above statements.  If so, do you think policymakers have been good stewards of monies needed for allocation to diseases like MS, or do you think they have shown foolishness in their recommendations? 

There are some that would argue that, while the burden on an individual MS patient is high, the burden on the community and society at large is not.  They are concerned about other diseases with a disproportionate amount of funding when the burden of the disease as a whole on society is concerned.  They think funding should be pulled from other diseases and disorders to go toward theirs.

Right now funding is not decided with consideration to the overall burden of the disease or disorder on society.  I think this is strange.  What do you think?

In one way I think it is good.  Without this way of dividing up funding, orphan and rare diseases would remain on the back burner, and patients who desperately need help would be rendered virtually helpless.

On the other hand, I think it is irresponsible not to take into consideration the immense burden of some diseases that are seriously underfunded.  Millions of people suffer and are essentially ignored.  When asked why legislators and policymakers don't take the burden on society into consideration when making these decisions, there are not any good answers.

Some diseases simply are taken with more seriousness than others.

Some think this has more to do with whether the disease is considered an "invisible illness".  Others think this has more to do with the lobbyists and those who have an agenda.

What do you think?

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