[Mb-civic] SUPER PIECE RE AVIAN FLU: The tragedy of Penikese Island - Ken Hartnett - Boston Globe Op-Ed

[William Swiggard]

The tragedy of Penikese Island

By Ken Hartnett  |  November 26, 2005  |  The Boston Globe

ONE HUNDRED years ago this month, Massachusetts politicians responded to 
a public health panic by opening a state leprosy hospital on barren 
Penikese Island, 14 miles off New Bedford near Cuttyhunk. They kept it 
operating for 16 years, isolating its foreign-born patients from family 
and friends in a punishing setting that drove up costs and compromised care.

While the Commonwealth's high-minded intention was to protect a 
vulnerable and stigmatized few from their fear-filled neighbors while 
giving them quality medical care, the state in reality snatched away 
life, stripping leprosy victims of family and friends while exposing 
them to experiments beyond their limited capacity for informed consent. 
Penikese patients spoke Russian, Hebrew, Portuguese, Japanese, Chinese, 
and Turkish, but few spoke English.

As our concerns mount these days over a potential avian flu pandemic, 
the social atrocity that was Penikese Hospital offers a modest 
cautionary tale about the need to keep concern from blooming into a 
general panic that can rattle medical as well as political judgment.

Clear heads don't prevail when fear is in the saddle; they certainly 
didn't in Massachusetts a century ago.

Of course, a potential avian flu pandemic is a matter of deep concern. 
''Being very worried is very appropriate," said Dr. Nesli Basgoz, an 
infectious disease specialist at Massachusetts General Hospital. Avian 
flu is highly contagious and virulent with death the outcome in about 
half the cases. Leprosy is not highly contagious nor highly virulent, 
though its long-term effects can be debilitating.

But, she said, there is a parallel to be drawn with the approach to 
leprosy a century ago. ''To me, both emphasize the need for education 
and a rational response, though the appropriate rational response is 
different in both diseases."

The Commonwealth was convinced it was acting appropriately. And why not? 
If any state seemed up to coping humanely with what we now call Hansen's 
Disease, it was enlightened and progressive Massachusetts. In fact, no 
state would prove more wrongheaded or inhumane.

Massachusetts would prove to be the first and only state to heed the 
call of Harvard dermatologist James C. White for a return to ''the 
sterner judgment of the Middle Ages" in coping with the threat of 
leprosy. The state Legislature in 1904 approved a bill authorizing the 
state to ''remove any person infected with a disease dangerous to the 
public health" to any place ''judged best for his accommodation and the 
safety of the public." Those removed could be held until they were 
deemed free of the disease. Since leprosy was then incurable, removal 
was forever.

Five cases were soon diagnosed within the Commonwealth. The state 
reacted by opting to build a leprosy hospital, first on state hospital 
land in Tewksbury and later on a remote tract of land near the 
Brewster-Chatham line. Public uproar, especially on Cape Cod, killed 
both proposals. By year's end the Commonwealth had plunked down $25,000 
to buy Penikese, an uninhabited island about as far from the mainland as 
one could get.

Dr. Frank Parker, a Malden general practitioner with a gentle manner and 
an openness to new challenges, ran the institution during all but the 
first year of its existence. He and his wife, Marion, lived on Penikese 
for 15 years, building a remarkable bond with patients.

Over Parker's objections, the state shut down the hospital in 1921 and 
transferred the remaining 13 patients to an even more remote area, 
Carville, La., where the federal government had opened its own 
leprosarium. Parker's patients were transferred by boat to a sealed 
train awaiting them in New Bedford. There a crowd of the curious 
gathered by the waterfront depot, covering their faces with 
handkerchiefs or scarves to ward off any vagrant germs.

Back on Penikese, the buildings that once housed the patients were 
burned, then dynamited, as if the commonwealth wanted to obliterate the 
traces of the hospital.

The most touching remnant of the institution remaining on the island is 
the melancholy burial ground which began filling up 1912 when Harvard 
University opened an ill-conceived research project on the island. 
Thirteen patients were on the island when the experiments began. By the 
time the chief researcher, Dr. James Honeij, left the island in 
September 1916, eight were dead.

That burial ground memorializes the unfortunate men and women who lived 
out their final years in forced isolation from virtually all they knew 
and loved; it also reminds us, as the fears of avian flu inevitably 
mount, that one way to judge a civilized society is how well it balances 
its fears and prejudices with its sense of humanity.

Ken Hartnett co-produced a WGBH documentary on the Penikese hospital in 
1994.
http://www.boston.com/news/globe/editorial_opinion/oped/articles/2005/11/26/the_tragedy_of_penikese_island/
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