Photo: Pierre-Laurent Durantin. Source: Pixabay
The beach is a great place to relax and cool off on a hot summer weekend. New Hampshire doesn’t have miles and miles of empty sand, but we do have some nice areas. And the ocean is cool, with the Labrador Current coming down past Canada along the New England coast.
But if you go to the beach, be sure to bring some protection from the sun! Aside from the health concerns that come from too much sun, some people are extremely sensitive, even to small amounts of sunlight. A doctor in Switzerland recently wrote about her experience with extreme sun sensitivity:
I frequently had unbearable burning pain after spending even short periods of time outdoors on a sunny day. This pain was incapacitating; the only option was to wait alone in a darkened room until the pain subsided. Some of my classmates made fun of me for wearing long clothing, hats, or using an umbrella on sunny days to protect myself.
She grew up with many health care professionals skeptical of her problems, even sending her to a psychologist for her “made up conditions,” despite the fact that she obviously had physical symptoms. But eventually she learned that her “allergic” reaction to sunlight had a name (EPP), she became a researcher, and she even discovered an effective treatment! But then her story then becomes a little Kafka-esque:
In the beginning of 2012, the approval process started. Given the overwhelming evidence for safety and effectiveness, patients and disease experts expected timely approval and rapid access to treatment. However, the EMA (European Medical Authority, like our FDA) questioned the extent of the benefits as well as whether the treatment would be meaningful. The drug was approved for treatment by the end of 2014, but before a newly approved medicine reaches patients, most European countries evaluate the benefits in relation to the costs to decide whether it should be paid for by their national health systems. In 2019, most EPP patients in Europe still do not have access to the only treatment for their condition.
It’s not enough for a drug to be safe and effective. It has to be cost-effective, and the cost of the disability – in this case, excruciating pain – has to be evaluated, scored, and weighed against the expense of the treatment. To make the drug available, this doctor had to form an advocacy group, lobby her government’s health agency, get on the agenda, and present her case over and over again.
Photo: E-Magine Art. Source: Flikr. CC-BY-2.0
One of the effects of the modern medical process with its double-blind tests is to make drugs much more costly to develop. Because they are so expensive, collective agencies (like governments or health insurers) are needed to pay for them. These agencies make decisions more slowly than individuals and companies; they tend to have crowded agendas and bargaining tables, with complex rules, regulations, and protocols. And the process seems to go on forever. As an aside, our own FDA also has yet to approve the drug.
So enjoy the beautiful weather and the sun! Just be thankful that sunblock and aloe are cheap and effective and available.
Douglas R. Tengdin, CFA
Charter Trust Company
“The Best Trust Company in New England”