Public Health is not a Privacy Breech for Citizen Protection and Disaster Prevention

emergency-preparednessHouston    We can’t have it both ways.  We can’t mourn the more than 1000 deaths in New Orleans from Hurricane Katrina and condemn the government for not taking responsibility for the most vulnerable citizens without transportation or facing medical problems, and also say that the government should stand aside from his duty in order to protect privacy rights of those individuals. 

            What am I talking about?  Well, it turns out that HHS working with local public health departments has conducted some pilot programs in New Orleans, central New York State around Binghamton, and Arizona or proactively reaching out to vulnerable populations when there might be health care emergencies.  All good so far, right?  If trouble is coming, storms are brewing, why not get ahead of the game.  To do so the government embraced big data though which has unsettled some folks.  They data mined to identify people that that might be impacted in an emergency. 

The experiment in New Orleans was recent and well-remembered by people living there in our still fragile post-Katrina world.  An ice storm was expected in the city which, dollars to donuts, was also likely to knockout electricity.  People got calls to be prepared and offers of help.  This was possible because earlier in this pilot the health department identified more than 600 New Orleanians that might have problems with breathing machines or dialysis that could in fact be life threatening.  In a test for a potential hurricane, they went out door knocking and asked people whether they were good or needed help.  Only 15 of the 600 were registered in some special needs directory in New Orleans, and who knew that even existed.  In one neighborhood their door knocks found that no one had a backup battery. 

Frankly to me this sounds fantastic.  It’s a story of government doing its job for goodness sakes

It also seems clear the rules were followed.  From the report:

Respecting the importance of federal and state laws that restrict the disclosure of medical data, the officials found a legal route for Medicare to transfer data on patients’ bills for medical equipment to public health authorities who have systems in place to protect patient privacy. They published a description of it in the Federal Register.

            Nothing all sneaky and NSA about that.  Public health officials and many of the rest of us might wish that more than just Medicare patients were protected in this way, like everyone whose lives depend on a machine and hospital orders and payments to medical equipment companies. 

            

There’s a difference between largely unregulated and unsupervised private and corporate data exchanges and an accountable government following the rules and protecting its citizens. We have to be able to draw the distinctions between Big Brother and Good Neighbor with the government.   We have to support getting the full benefits from our tax dollars with the government’s use of information, and spend more of our time making sure corporations aren’t just pinching their pennies with the information in their hands.

Facebooktwitterredditpinterestlinkedinmail

India’s Supreme Court Gives Temporary Victory for Key Generic Drugs

New Orleans   Thanks to a decision by the Supreme Court in India many desperately ill leukemia patients in Africa and Asia will live, though of course many more will die.  The court ruled that that Indian pharmaceutical factories can continue making a generic version of the drug Gleevec made by Novartis.  In the developed world Novartis charges $75000 per year to patients using this highly effective regimen.  The Indian generic version costs about $2500 a year, far out of the reach of most Indians of course but affordable by many who would be die on the altar of big pharma profiteering.

Of course Novartis and other companies like it justify the prices as being necessary to pay for their research and expenses, but even to the degree some of that might be true, such an argument ignores the fundamentals of the marketplace.  Novartis can charge any price it wants as long as there is no competition for its drug and its utility, and it mostly does.  Except where the tragically ill have access to cheaper generics, 80% of which are provided by companies in India and China.  Other countries like Argentina, Brazil, and the Philippines are also challenging patents in cases worth watching.

Make no mistake though, this is a temporary victory.  Big pharma pushed India to pass a law with more patent protection in 1995.  The Indian Supreme Court ruled that Novartis had developed this drug in 1993 and though the company retooled its efforts on the drug, the patent was not fundamentally different for the adjustments made after 1995.  Other generics coming on the market since 1995 will undoubtedly have a tougher time withstanding the challenge.

These issues are not trivial.  They mean life and death to millions.  Millions, if you hear and read me clearly!

The hope is far from home unless you live in India, Argentina, or the Philippines which have passed similar restrictions on patent playing by big pharma.  Brazil and Thailand have taken the even more important step of issuing compulsory licenses for some drugs, like those effective in the AIDS epidemic, because of multilateral trade agreements that allow such actions because of overriding concerns for public health and welfare.

Public health and welfare has to trump predatory profiteering.  Such laws must expand and multiply so that companies are certainly allowed to survive, but more importantly, people are allowed to live.

Facebooktwitterredditpinterestlinkedinmail