Longer looks: Parents' crusade on rare diseases; fighting obesity; experts' view of alternative medicine

Nov 22 2013

Every week reporter Ankita Rao selects interesting reading from around the Web.

The Wall Street Journal: Trials: The Children's Crusade
In the beginning, Chris Hempel noticed the clumsiness. Her girls tripped over toys on the floor. Their grandfather said he couldn't teach them to pedal their tricycles. … The Hempels learned of people who called themselves citizen-scientists. Many shared research papers and their day-to-day experience. Some talked of their willingness to try any promising drug. Others sought a role as equal partners with researchers. Scientists, while sympathetic, generally believe their work should be left to experts. Families are encouraged to raise money if they want to help, but the traditional view is that amateurs can't shape research or find cures. The Hempels found a maddening gap between the search for scientific knowledge and the search for treatments (Amy Docker Marcus, 11/2013).

Medium: Imagining the Post-Antibiotics Future
Penicillin was first discovered in 1928 and battlefield casualties got the first non-experimental doses in 1943, quickly saving soldiers who had been close to death.  ... Penicillin-resistant staph emerged in 1940, while the drug was still being given to only a few patients. ... In 2004, there were only five new antibiotics in development, compared to more than 500 chronic-disease drugs for which resistance is not an issue -; and which, unlike antibiotics, are taken for years, not days. Since then, resistant bugs have grown more numerous and by sharing DNA with each other, have become even tougher to treat with the few drugs that remain (Maryn McKenna, 11/20).

Marketplace: The New Math Of Health Care
About This Collection [of stories]: The price tag for medical care, already big and getting bigger, looms over Americans. Retirees see their savings vanish. Families face tough and often bewildering choices, and uncertainties over Obamacare only add to the confusion. This special section ... examines the soaring out-of-pocket costs of staying healthy, end-of-life care, and strategies for picking doctors and health plans. We also explore what doctors facing death can teach us about dying well (11/19).

The New York Times: Planning For A Future In The Face Of Terminal Illness
Patrick Skeldon, a commercial airline pilot, started having trouble walking in the autumn of 2003. His doctor thought he had a vitamin deficiency and prescribed supplements. When those didn't work, the doctor referred him to a neurologist. The next year, he was told he had amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease. He was 59. … As people live longer with terminal diseases, the costs associated with their care rise. The risk is often not just that there will not be enough money to provide that care, but that a surviving spouse will be left alone and destitute. With advisers cautioning that terminal care expenses could easily rise to $1 million or more for the last years of life, they say there are simple and sophisticated strategies to make the most of the money at hand (Patrick Sullivan, 11/19).

The New York Times: To Fight Obesity, A Carrot, And A Stick
Childhood obesity, at long last, may have peaked -; even among the poor, where the problem is most prevalent. Between 2008 and 2011, according to a study from the Centers for Disease Control and Prevention, 19 states and territories saw a small but significant drop in obesity rates among low-income preschoolers. … Attitudes are changing. Access to healthy food is increasing. But there's another change that's necessary, and it's probably the most important one. ... That's cost. On a limited budget, people buy cheap and unhealthy food. Community groups and cities can't solve that problem -; not for more than a handful of people at a time, anyway. But the federal government can (Tina Rosenberg, 11/16).

The Wall Street Journal: Experts Views On Alternative Medicine, Medicare 
Health industry experts answer questions about the misconceptions consumers have about alternative medicine, such as "Beware the Impurities in 'Natural' Supplements," while others look at the proposals to change the eligibility age for Medicare (11/20).

Time: Shortage of Psychiatric Beds Preceded State Senator's Stabbing
The son of Virginia State Senator Creigh Deeds received an emergency mental evaluation the day before the apparent attempted murder-suicide, but no hospitals could admit him. The problem isn't new. ... The availability of inpatient psychiatric care has decreased nationally in recent years. Research from the Treatment Advocacy Center, a national nonprofit focused on eliminating barriers to treatment of severe mental illness, found that the number of state psychiatric beds decreased nationwide by 14% between 2005 and 2010. ... Tightening state budgets have widened the gap in available beds (Alexandra Sifferlin, 11/20).

Al Jazeera: The Military's Hidden Mental Health Crisis: Spousal Trauma
Army wife Melissa Bourgeois hit her breaking point five years ago when she was living at a U.S. military base in Vicenza, Italy, with her husband, Eric, an infantryman. Eric was just back from a harrowing second deployment to Afghanistan marked by frequent firefights. Filled with an uncontrollable rage, he spent his nights self-medicating at bars with his war buddies. … Melissa, 25 at the time, with their two small children, felt isolated in a new country where she barely spoke the language. She needed to talk to someone about her situation, but she said each time she sought mental-health care on the base, she was given Valium and sent away. ... In a U.S. military psychologically ravaged by 12 years of continuous war, troops' family members, like Melissa, are the victims of a hidden mental-health crisis (Sarah Lazare, 11/15).