Don’t Stand So Close to Me (Five Feet Apart)

I chose this song more for its ironic title than the content. It’s a song by the Police, released in 1980, apparently about a female student and a school teacher who have a forbidden sexual chemistry. While I like the song I don’t particularly like the content and background of the lyrics. The topic has been sung about before, like in Van Halen’s Hot for Teacher. The fact that Van Halen and the Police were awesome bands that doesn’t make it okay. We have all heard in the news about inappropriate relationships between female or male teachers and their students, and the consequences that resulted. I won’t glorify that any further, but will just say I liked the title of the song as it relates to the topic I really wanted to talk about, Five Feet Apart.

This is a book, written by Rachael Lippincott and collaborated on by many, about 2 teenagers with CF (Will and Stella). They are polar opposites: Stella is neurotic about her treatments and even developed an app to remind her to do and take everything on time. Will is more of a rebel, rarely doing his therapies and stating as soon as he turns 18 he will leave the hospital to live out his days on his own terms. He has a ticking clock since he has colonized a deadly bacteria, B. Cepacia (see explanation below). The main difficulty with this bacteria is its resistance to most or all antibiotics.

This is the backdrop of them “meeting” in the hospital. I say that in quotes because the isolation and infection control measures for us cystics in the hospital are extreme, to say the least. CF patients are isolated in their own rooms, and all medical personnel must wear full disposable gowns and sanitize in and out of every room. I am always astounded by the amount of gowns that are used just for me everyday, probably upwards of 50! Then if a CFer wants to leave their room, they must wear a mask and stay 6 feet apart from other patients. During the story, Will and Stella end up liking each other, and Stella decides to “steal” one foot of distance thereby making them Five Feet Apart. I won’t spoil the story or the ending, so you will have to read the book or go see the movie.

There has been an ongoing debate in the CF community about this book/movie, with wildly different points of view. Some believe that the CF isn’t accurately portrayed in the movie, and that is just a backdrop to the romantic storyline (which is also unrealistic). Others believe that while the CF and hospital depiction may not be fully accurate, it is important to show the mindset of a CF patient in the hospital. Also it could help raise awareness and publicity not only for the illness but how patients and their loved ones cope with this debilitating disease. I land somewhere in the middle; truth be told I only read the book and haven’t seen the movie. I think the book probably more accurately portrayed the CF hospital environment and the mindset of a patient, as books can offer a better imagery than a movie. However, I believe the movie is a good thing overall. So let’s discuss from both sides.

There are a few things that might turn people in the CF community off to this film. As seen in some of the trailers, both of the characters do not wear masks at all times, and are given free reign over the hospital to wander as they please. This may or may not be accurate depending on the institution, although the mask rule is not a variable and CF patients must wear them when around other CFers! I have been in hospitals where I was able to roam, and some when they wouldn’t allow me to leave the room let alone the floor. So it’s hard to judge that aspect. But, the romantic element to the movie is probably exaggerated and fantasized. Like anyone in the hospital is in the mood for love; the whole reason you are in the hospital in the first place…….is because you are sick!! And not just sick, but on oxygen, hooked up to IVs, fatigued, fighting with your body. Some people are waiting for lung transplants, or even too sick to be considered for one. I know when I’ve been at my lowest, I wasn’t thinking about hooking up with other people who are inpatient for exacerbations. There is too much else going on: treatments, exhaustion, effects of strong antibiotics, etc. Safe to say, it’s not a pretty picture. I’m just saying, the hospital romance seems very Hollywood. I’m sure that other elements of the hospital experience aren’t accurate, even though they consulted Claire Wineland. She was a CF activist and advocate who sadly died recently from complications of a lung transplant.

That brings me to the other side of this arguement, and the biggest positive of this movie: awareness and publicity. Any awareness and publicity for CF is a good thing in my view, as society as a whole does not know much about this disease. Even people who might know the basics, or know someone who has CF, they probably are unaware about the hospital experience, the daily difficulties and complications that come with this disease. Seeing it on the big screen, all that comes into play both physically and emotionally, is hard to relay to people. While this film may be slightly glorified, it’s not as dark as other movies centered around CF. When I was little, there was a film Alex, written by Frank Deford about his daughter Alex and her life. She died in 1980, and her short life was riddled with hospitalizations and complications. It was a very tough movie to see, so tough that I wasn’t allowed to watch it when I was young. Then there is A Fault in Our Stars, a more recent film with a similar pretext to Five Feet Apart. Two teenagers, one with B. Cepacia, fall in love online and get married despite all the warnings against. They both died shortly after. And………that’s about it. There haven’t been a lot of movies centered around CF, because it is so hard to depict given the subject matter. Five Feet Apart may not be the most real or depressing movie about CF, but it will show people some of the difficulties and hardships people struggle with their entire lives. They might tell their friends, or try to learn more about it. If more people know about CF, then more money can be raised for research, which can lead to a cure. CF can someday stand for Cure Found.

So go see the film. Bring your friends. Read the book. Learn more about this disease.

Watch the movie trailer below:

https://www.youtube.com/watch?v=24YrEAGF32M&vidve=5727&autoplay=1

Information about B. Cepacia from the CF foundation:

Burkholderia bacteria are often resistant to many antibiotics, which makes them difficult to treat once they infect the lungs. However, some species may be successfully treated with combinations of antibiotics.

Basic infection prevention and control practices reduce the risk of getting or spreading B. cepacia. These bacteria pose very little medical risks to healthy people. However, some people who have a serious illness such as cancer or acquired immunodeficiency syndrome (AIDS) may be at risk of an infection from these bacteria.

How B. cepacia complex species affect people with CF varies. Researchers do not yet know why some people with CF are more likely to get B. cepacia than others.

In many people with CF, infection with B. cepacia may not worsen lung disease. In up to one-third of people infected with B. cepacia, the rate of lung function decline appears to be only slightly faster. However, for a smaller number of people, B. cepacia can cause a rapid decline in lung function and health. This can lead to more severe lung disease and maybe death.

Among the different species of B. cepacia complex, some may be more harmful than others (for example, B. cenocepacia and B. dolosa). The Cystic Fibrosis Foundation is working with researchers to learn more about the B. cepacia complex and help identify new treatments.

It is not always known how people with CF become infected with B. cepacia complex. Research has shown that people with CF can get B. cepacia from others who are infected with these bacteria. The germs spread either by direct contact, such as kissing, or indirectly from touching objects with the germs, such as doorknobs. This is known as cross-infection and can happen in social settings like events, gatherings or meetings.

In some cases, shared infection was not found in the lungs of a person with CF until two years after being exposed to someone else who was infected with the germ.

For many people with CF, infection with B. cepacia complex cannot be traced back to exposure to another infected person. In these cases, infection may have occurred by exposure to Burkholderia in the natural environment.

For the Love of Money

I was listening through a funk mix the other day, and this gem came on, courtesy of The O’Jays. Written by the songwriting pair Gamble and Huff who was largely credited with creating the Philadelphia sound of the 60s and 70s, it is a song that anyone can enjoy. Whether you’re a funkateer or not, or are part of different generations (millennials, Gen Xers, baby boomers, etc.), anybody listening to this song starts bobbing their collective heads to the rhythm. Starting with a hi-hat and funky guitar, then slowly added with a great baseline, and the melodic voices of the O’Jays that was very reminiscent of the Temptations. Everyone knows the words to this timeless classic; they hold true as much today as they did in 1973.

For the love of money
People will steal from their mother
For the love of money
People will rob their own brother

For a small piece of paper it carries a lot of weight

Call it lean, mean, mean green

Almighty dollar

While I was listening, I related this to a current and very important matter: drug prices. This is an issue that affects not only the CF community, but American society in general. Anyone with Diabetes who may need insulin, to someone with and auto-immune disease such as Rheumatoid Arthritis or Crohn’s disease, to a person with cancer. These people are clinging to hopes of any new medications that may be available, that in turn may increase not only their life expectancy but also quality of life. Mari and I were watching Hasan Minhaj’s new show on Netflix, Patriot Act, while he was discussing this very topic. America has the highest drug prices of any developed country, causing certain people to prioritize whether or not they can get their needed medication due to overwhelming increase in costs. People are traveling to other countries and smuggling back their meds, or spacing out their required daily medications and not taking them as prescribed because they cannot afford the refills. That is an incredulous statement for the richest country in the world, don’t you think?

For me, a person who with CF, I can relate to these struggles. While we were not poor growing up, I can only imagine the sacrifices my parents made in order for me to receive the proper care and all the newest treatments available. I know I probably didn’t appreciate it at the time, but I sure do now as an adult. There have been more than a couple times that I have not been able to afford my medications, due to a variety of reasons. Whether it was a poor insurance policy that only covered a minor percentage of my medications (most CF meds are top tier without any generic substitute), or not being able to shell out the hundreds of dollars for nutritional supplements or vitamins/minerals that are not covered on any insurance, or going to collections for the rising number of monthly payments to hospitals and clinics, the list goes on. All the while, I make a good living….this fact makes it more difficult to swallow. How can people with chronic illness afford be expected to succeed in this system when they can’t even afford what they need to survive?

This discussion becomes even more relevant to the CF community in the age of CFTR modulators. It’s a new class of drug that has been undergoing trials over the past several years. In short, it helps regulate the sodium chloride pump and prevents the buildup of sticky mucus congregating in the lungs. It’s important to point out that these drugs are not cures, but can significantly impact lives of those with CF. There are different classes of modulators, dependent on the specific genetic mutation of the person with CF.

Orkambi is one such drug, one that targets those with CF who have 2 forms of the most common genetic mutation (F508Delta). It is now on the market, at the low, low cost of approximately $100,000 per year!! Sounds like a bargain, right?! Not so much say the insurance companies. Certain companies, both private or state/federally regulated, have determined that the cost does not justify the possible benefit of this medication. In turn they are denying coverage for these meds. Imagine this……..someone who has lived their whole life just getting by until a possible life-altering medication comes by, and when it finally does it isn’t covered. What would you do? Most people, myself included, could not even fathom shelling out many thousands of dollars per month in order to afford the drug. This is another example of CF literally beating the life out of you…….even when there is hope it comes with heavy strings. Are you supposed to go into bankruptcy just to live? What kind of life is that? How is the government going to help these people?? Oh yeah……..they’re not! They are just going to try to reduce people’s access to the medical care and aide they need by reducing the qualifications for open market insurance and Medicaid expansion. It’s exhausting and infuriating!!

It all comes down to money: how much the drug companies can make, and how many politicians they can have in their pocket to influence their profit margins. Like the song says, “For a small piece of paper, it carries a lot of weight.” Truth!

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