NY Times Column Highlights PKD Family
October 05, 2009 |
Advocacy
PKD received worldwide exposure today, Sunday, Oct. 4, as the topic of a column in the New York Times. Nicholas D. Kristof, a two-time Pulitzer Prize winner, wrote about a Dallas father with PKD who needed a kidney transplant. His two sons, both in their 20s, wanted to donate but feared if tests confirmed one or both had PKD, they’d risk their shot at health insurance.
In the column, “Dad’s Life or Yours? You Choose,” Kristof discussed the ins and outs of PKD, including the Genetic Information Nondiscrimination Act (GINA), which the PKD Foundation provided major assistance in getting passed and signed into law in 2008 after 13 years of hard work on Capitol Hill.
GINA prohibits the use of genetic information in employment decisions, such as hiring, promotion, job assignments or termination. The legislation also prohibits health plans and health insurance issuers from adjusting premiums or contribution amounts in group or individual markets and stop insurers from establishing enrollment restrictions for groups on the basis of genetic information.
The late Edward Kennedy (D-MA) called GINA “the first major civil rights legislation of the 21st century.”
For PKD patients like those highlighted in The Times, the fear of genetic discrimination often keeps individuals from testing for the disease and prevents many who know they have the disease from accessing the very treatments that could prolong their kidney function. In addition, PKD-specific clinical drug trials have had difficulty recruiting volunteers because of the unwillingness to go public with their PKD status. These patients fear losing their health insurance or missing out on promotions, partnership opportunities, pay raises, increased work responsibilities and other employment enhancement options. To learn more about GINA and the PKD Foundation’s advocacy efforts, click here.
In his column, Kristof’s references to the Dallas family’s plight with PKD pointed out his advocacy for health care reform, a ‘hot political topic’ currently in the news. The PKD Foundation is a non-partisan, nonprofit group which is strongly committed to the importance of PKD research, patient/family education, advocacy, support and awareness – all needed to help the PKD Foundation find treatments and a cure for the disease.
In an effort to raise even more awareness of PKD, everyone is encouraged to go online and read Kristof’s New York Times column and his blog, where you can comment and share your own stories with PKD. Click here to request a free information packet and learn more about the PKD Foundation’s fight against PKD.