Thursday, November 10, 2016

Why are We Mourning?

As I scrolled through my Facebook feed yesterday, I was heartened to see all of my friends posting about how, either because of or in spite of the results of the presidential election, we needed to come together as a country, love each other, and lose the spirit of bitterness and anger that has characterized this election.

Today, rather than posts of love and encouragement, the general feel of my Facebook feed has been something like this: "why is everybody still complaining? The world isn't over. The sun has continued to rise. Even if things don't turn out as well as I'm hoping they will with this new president, things are really not going to be as bad as you all think, so buck up and stop crying! Besides, we had to deal with this four and eight years ago, so it's about time you had a turn at not getting what you want."

I think these statements are completely reasonable from the perspective of the people giving them. I think that as far as they concerned they are right; life will go on just about as normal for them, and they really don't have anything to worry about.

In fact, I'm one of those people that have nothing to worry about. My future is as secure as secure can be. I'm a white male in good health; Trump and Pence's initiatives will probably benefit me, if anything, and the only way they're going to hurt me is if they start discriminating directly against Mormons. Because of the great privileges and blessings I going to go to a sweet grad school next fall, maybe Stanford or Duke, and study chemistry and cure diseases and wear hot lab coats and blow things up in chemistry classes. I'll publish scientific articles in internationally recognized journals, and discover things that will change people's lives, and I'll be well-respected wherever I go. So, really, if it were just for me, I'd be right there with all of my friends telling the rest of the world to get over themselves and cheer up.


But... meet Kate. This is my adorable three-and-a-half year old niece. Along with being absolutely the most adorable child on the planet, she is a ball of energy and spunk. She talks in cute little toddler-speak and pretends to be either a cat or a unicorn, depending on the day. She has all of us, all of her uncles, aunts, and grandparents, wrapped around her little finger.


These is Kate's mom, my sister, Cindy. Along with being one of my favorite humans alive, Cindy is probably going to be a moderately famous author in a few years (her first book comes out in 2018; agents and publishers and everybody else who has read it just rave about it, so it'll probably make a splash). She is just as spunky as her daughter, and is also intelligent, thoughtful, and kind.

My sister has a genetic disease called Cystic Fibrosis. This disease affects her lungs, her digestive system, and her immune system. When she was born the doctors told my parents that she probably wouldn't live past 19; on her 19th birthday we threw a huge party to celebrate that she was still alive. She's now 28. Keeping her alive has only been possible through huge advances in modern medicine. With the medications she is currently on, she is healthy enough that she's only in the hospital once or twice a year, usually for about a week at a time. She doesn't have nearly the energy or health of your average person, but she does a good job of using what little energy she does have to write and be a mom to Kate.

My sister's medications cost a lot of money. Like, several times what my brother-in-law makes a year. There is no way that they could pay for them unless my brother-in-law suddenly became a multi-millionaire CEO overnight. Because her disease is genetic, which means she's had it literally as long as she's been alive, insurance companies would generally deny her coverage because she has a "preexisting condition." The Affordable Care Act was a godsend for her because it doesn't allow insurance companies to deny patients coverage due to preexisting conditions. Through it they were able to purchase insurance, and, although the premiums are very high, as my sister puts it, "I'd rather be broke than dead."

Trump and Pence's plan to repeal the ACA puts my sister in a tight spot. She isn't eligible for Medicare or Medicaid, and if the ACA's protection for people with preexisting conditions disappears, literally no one will ensure her. She can get insurance through my brother-in-law's employment, I guess, if he is working for someone that offers a group insurance plan... except that he is doing contract work that doesn't offer group insurance plans. And even if he were to quit his current job and find a job that offers an insurance plan, what if he were to lose it and not be able to find another one?

Even setting aside the issue of whether or not she'll be able to get health insurance, before the ACA insurance plans typically had lifetime caps after which they'd stop covering a person; usually these were 1-2 million dollars. My sister's prescriptions are in the range of half a million dollars a year... I'll let you do the math on how long it would take her to max out one of those lifetime limits with medications alone, not even counting hospital stays.

 So, should she just... die so that the rest of us don't have to pay higher insurance premiums? Should she, unable to afford the medications that would prolong her life and keep her in as good of health as she has been, succumb to her disease and leave my adorable niece Kate without a mother?

You see, this is one reason why people are mourning the results of the election, and why it really isn't helping anything to say "buck up and stop crying." Although I, myself, will be completely and totally fine, as a middle-class white male in excellent health, I mourn because I don't know what is going to happen to my dear sister Cindy.





 I think there's another reason that people are mourning, too, that I don't understand as intimately as I do this one. I'll quote my good friend Mariah to explain it:

The world may [continue to be alright]. The individuals and groups against whom Donald Trump and Mike Pence's platform unjustly fights....not so much. I'm not worried about countries, nations, worlds so much as I'm worried about my Mexican friend who may experience hate crimes that may go unpunished under this presidency. I'm worried about girls who get raped or sexually assaulted who will be ignored and whose attackers won't be convicted, or maybe just for a couple months in jail to "teach them a lesson". (If people don't think this ALREADY happens, they need to open their eyes and do a bit of research--literally this year a girl was drugged and raped behind a dumpster, the man was caught in the very act by two eyewitnesses, and he was given six months in prison so that his "couple minutes of action" didn't affect his blooming sports career. And, as much as we'd like to believe it is, this is actually not even remotely uncommon. I'm sorry, I'm not trying to offend, but if you don't think this will get worse under a man who has no remorse (beyond getting caught) for sexually assaulting several women himself, I think you're deluding yourself.) I'm worried about gay and trans people, who will be legally persecuted and probably subjected to mandatory experimental therapy (check out Mike Pence's plan from January about "gay conversion therapy"). 

In essence, I'm sure the world will "recover" or "keep turning." I just don't think it's fair that just because many of us don't find ourselves in minority groups (meaning yeah, it probably will be okay for us and we can just wait it out) we try and tell people who are LITERALLY AFRAID FOR THEIR LIVES AND SAFETY that it's all just gonna be okay, don't worry about it, we can stick it out, it's not a big deal. I'm not trying to say we should be negative and doomsdayers, but I just don't feel comfortable telling my friends and family of marginalized groups that it's not a big deal, when actually, it is. 







What I wish I could ask you to do is to write your congressmen and ask them not to repeal the ACA. I'm a bit more of a realist than that, though, so instead I'll ask that, instead of brazenly asking us to grow up and stop crying, you take a moment to sit with us, listen to us explain our problems, and mourn with us. While I will not stop being friends with anyone who is rejoicing in Trump's victory, and while I do hope that he is able to accomplish lots of good and needed things, I plead with you, my friends, my brothers, my sisters, to stop condescending to us and, instead, give us some space for grief.

7 comments:

Brent Stratton said...

Healthcare is such a hard issue. It seems like no matter what decision is made crested winners and losers. With ACA thousands like Cindy Lin can be at ease with access to healthcare at a fraction of the cost. But several years in and hundreds of thousands of healthy families are paying thousands of dollars each month for insurance premiums they can no longer afford. Many families are facing premium increased of up to $2,000 more oer .month starting in January. Cancel ACA and the Cindy Lin's of the country could losse tbeir insurance. Keep it and others can't afford it. Sooo hard and both options suck for some groups.

C. Beck Mayberry said...

Are you sure you wouldn't rather have us write to our representatives to ensure that the ACA's replacement legislation ensures coverage for participants with pre-existing conditions?

Jason said...

Beck, that would actually be wonderful! Fabulous idea! If you do so, please also mention the lifetime caps.

Brent, I know what you mean. Is it selfish of me to not care as much about the thousands of families who are paying thousands of dollars for insurance as about my sister's life? Is it selfish of me to prefer for them to live with big bills than for my sister to die?

Brent Stratton said...

Not at all Jason. I wasn't arguing against what you said but just pointing out it is a hard fix. I think over the long term we need to change where the funding comes for people like Cindy Lin. The masses who are paying double or triple for their premiums to cover no lifetime max caps will eventually vote to get rid of it if there is a direct correlation. But if the funding came from the general tax revenue base it is more likely to stick.

Jason said...

So, you mean like Medicare or Medicaid? That people like Cindy Lynn should be able to get on Medicaid, instead of needing a program like the ACA to be able to get insurance?

Brent Stratton said...

I don't know the solution I just see the problem. Maybe there should be a piece carved out of the existing Medicare program for those who can't be covered in a sustainable market plan. The cost to cover a family with ACA approved insurance is way more than a minimum wage worker earns in a year and its going up and that is not sustainable. So something big will need to change with the ACA sooner rather than later. For the few of us that know and love a Cindy Lin there are thousands who don't and I'm doubtful them all will agree to pay more to cover the Cindy Lin's of the world when there is a direct correlation between higher costs healthcare costs and covering someone they don't know. It's the equivalent to betting the average american will donate $100 to gofundme requests for friends of friends they have never met. 6 to 11 times every month. But my thought was that if it were harder for voters to identify the correlation between taxes paid by them and a program like Medicare or Medicaid and that may be the vehicle.

On the flip side we have lots of laws and programs that benefit a specific group of people aka the special interest groups. And it is always harder to repeal a government program than it is to start one so there is hope that whatever changes are made (if there are any) will include something to cover those who pre ACA were uninsurable.

C. Beck Mayberry said...

Hopefully this is of comfort to you.

https://youtu.be/Z73H5urfx-c