April 2013

Gleevec, a cancer drug often used to treat chronic myeloid leukemia, costs above $100,000 a year. Now over 100 specialists from 15 countries specializing in this cancer have written Novartis, the drug’s manufacturer and other pharmaceuticals, in an attempt to persuade them to bring the cost down. They put forth the idea that such a high price for a drug to keep someone alive is profiteering, and liken that to huge price increases after a disaster. The doctors point out that in 2001 when Gleevec first went on the market, it cost $30,000 a year, and that now that it has more than tripled in price, there are other drugs which can compete with it but which are even more expensive. Before she died unexpectedly in an accident, my sister, who had rheumatoid arthritis, was being watched for this cancer. Her co-pay for her RA drugs was already $1000 a month and I used to wonder how we would manage when or if the cancer would manifest itself. It’s therefore easy for me to translate these prices into family situations and tragedies. There is an estimated 1.2 to 1.5 million people in the world with this cancer. Novartis’s answer was that it has given the drug free to 5000 uninsured or under insured people and provided 50,000 with free drugs in low income countries. Seems a drop in the bucket especially given that Gleevec’s sales of $4.7 billion in 2012 was Novartis’s best selling drug. It’s going to take a lot more than a letter from 100 doctors (including one who helped develop Gleevec) to solve the problem, but it is a hopeful beginning.

There may be a group that is more reviled than sex offenders, but it’s hard to find. That’s why Janice Belllucci’s work with them is so impressive. She got involved out of compassion after talking to the person who installed a water purifier for her and learning how hard life had been for him since leaving prison. She read his book and began working for the rights of the registrants, those whom others call sex offenders and who have by law to register their whereabouts. A lawyer, who used to work in aerospace, she thinks of the issues surrounding those who are no longer in prison as civil rights. Many cities have tried to restrict their whereabouts so much so that of the 88,000 offenders in the state of California, about one third are homeless. She agrees that what they did requires prison time, but she thinks they need to be able to have a chance to reenter society if they are not to become repeat offenders. She’s the president of the California chapter of Reform Sex Offenders Laws and when Simi Valley tried to pass a law requiring sex offenders to post signs of their front door warning trick or treaters, she was able to get them not to pass the law. Her efforts aren’t popular in certain circles and that’s why Janice Bellucci’s work is not only needed but has to be respected.

A UNICEF report ranking children’s well-being puts the U.S. in 26th place, and found that there does not appear to be a relationship between how wealthy a nation is, that is how high its per capita GDP is, and overall child well-being. The Netherlands was in the lead followed by Norway, Iceland, Finland and Sweden. At the bottom were Lithuania, Latvia and Romania. Two recent NYT’s stories by revealing our hidden values about children’s rights seem to give some explanation as to why this might be. As we may know there is now more policemen in schools, and that seems to translate as more children in court. “The most striking impact of school police officers so far,” says Erik Eckholm’s article, “…has been a surge in arrests or misdemeanor charges for essentially nonviolent behavior—including scuffles, truancy and cursing at teachers—that sends children into the criminal courts,” offenses that used to be handled in the principal’s office. The other article by Sonia Nazario who’s often written about the plight of immigrants and their children is about undocumented children who end up in court alone often without representation, since undocumented immigrants do not have right to a public defender. These children, she writes, “some as young as 2 years old—have no one to help them make the case that they should not be deported.” It’s not about the ranking, or being best, it’s just about valuing children and making the necessary changes to bring that about.