Sixty Five Roses

Have you ever sat in your mid-day slump at work getting wonderfully lost in a website that you know is just going to suck you in and make you love it when all of a sudden you come across one of the rare corners of the internet that isn’t loaded down with snark? Congratulations! You’ve made it there today! Betraying my usual “crusty-on-the-outside” and opting for my more unseen “gooey-in-the-center”, I’m writing today about a documentary that aired last week on OWN (yes, the Oprah place; don’t run just yet) called 65_RedRoses. And later on in this email (spoiler alert) I’m going to ask you to do something. Bear with me.

65_RedRoses­­ is a documentary about a young woman named Eva Markvoort who is living with cystic fibrosis, a fatal genetic disease that is slowly killing her. The documentary was made by friends of hers after graduation from film school and, frankly, can best be described in a single word as “heart-wrenching.” (Hyphens count for single words, right?) Eva’s story is, sadly, very typical for someone with the disease. She is isolated because people with CF can’t be in the same room as each other without potentially making each other sicker. At the same time, the disease has been slowly causing mucus to build up in her lungs over the 25 years of her life, to the point where her lungs are failing and she can no longer draw breath effectively. After her doctors tell her that her lungs have become so clogged with mucus as to limit her chances of survival, her only option left becomes a complete double lung transplant.

 That's a laptop. Actual lung transplant technology sold separately.

 The film follows Eva’s life as she waits for a donor and blogs about her experiences (the title of the film is her online screen name, itself referencing how children often refer to the disease as “sixty five roses” because “cystic fibrosis” is hard to say), all the while her own health is deteriorating. It showcases exactly how conflicting it can be to have a life-threatening disease as evidenced by one scene that illustrates Eva’s family’s guilty optimism about graduation season; turns out graduations are great for donor organs because of the number of healthy young people with perfectly good organs who die in drunk driving accidents.

Unlike some shows that play up the melodrama (and actual drama) of people with severe illnesses to the point where what’s shown isn’t even representative of the disease in real life, the disease displayed in 65_RedRoses is ridiculously accurate. That verisimilitude is made all the more frustrating by how much progress has been made in the fight against the disease recently. In the 1950s, parents who had a child with CF were often told by their doctors not to expect the child to live to see elementary school. Today, thanks to cutting edge treatment and a not inconsiderable amount of research, the projected age of survival is in the late 30s. Unfortunately, despite those advances, about half of the population will still be dead before they’re 26-years-old.

There’s any number of sob-story documentaries about rare diseases out there, but 65_RedRoses manages to cut itself a bit above the rest. It’s honest, genuine, illuminating and, strangely enough, actually kind of uplifting. It can be hard to watch, dipping equally into body horror for all the medical treatments Eva goes through and psychological dread for her family. But Eva’s spirit, as well as the dedication of her medical team, shines through brilliantly. The film does a wonderful job of helping the viewer to understand the ticking of the clock and how fast that clock is moving.

But entertainment aside, here’s where I confess my bigger reason for talking about this bit of television: In real life, because blogging with friends about TV shows has yet to pay off financially, I work for the Cystic Fibrosis Foundation, a non-profit organization that accredits and maintains over 110 care centers throughout the country to treat people with CF as well as serves as the primary driver of medical research to find a cure for the disease. In the past five years, we’ve invested over $660 million in CF research and it’s paying off. This year a drug that we developed in partnership with a small pharmaceutical company came out that corrects the genetic defect that causes cystic fibrosis. It’s the first time in the history of medicine that we’ve been able to come up with a pill that fixes a genetic error and bring it safely into the hands of patients. The problem is that this drug only treats about 4% of the entire CF population. But just this week, on Monday May 7^th, we got word that this drug’s chemical cousin out-performed our expectations of it in a clinical trial. This new drug, which still requires more costly testing, would treat about 60% of all people with CF.

Cystic fibrosis has been around as long as mankind has. We’ve found historical records describing the symptoms going back to the middle ages in Europe, but the first time kids starting living with it beyond the first few years of their life wasn’t until the 20^th century. It’s realistic to say that if this new drug can come to market, for the first time in human history we’d be able to have a group of people who could live their entire lives with cystic fibrosis and not die from it. We’re close to our goal, but we need you to help by making a donation to the Cystic Fibrosis Foundation. Need more convincing? Watch this:

Cue tears starting in 3...2...

So there’s my plea – give us a couple of bucks and help us make life a little bit better. Watch 65_RedRoses and then please make a donation to the Cystic Fibrosis Foundation to help us further our goal of finding a cure or control for cystic fibrosis. And I promise to get back to blogging about how ridiculous Mad Men is in short order.