Showing posts with label Celebrities. Show all posts
Showing posts with label Celebrities. Show all posts

Thursday, September 21, 2017

Too Rich To Be Sick, Or Too Cruel To Be Kind?

There is so much going on in our world today that is simply heartbreaking.  The things that are happening are beyond words.  But one area of my life where I refuse to be silent is where my healthcare is concerned.  And right now, a bunch of rich, white men are trying to take my – and your – healthcare away.  And as far as I can tell, the only real reason why they are doing that is because they can.  

The last time I checked, no one – rich or poor – has emptied their pockets to pay for my healthcare.  The only one who has been bled dry physically, emotionally, or financially, is me.

So please, stop putting forth this argument because it is convincing those in power, whether they should be or not, that healthcare is a commodity, that it will be bought and sold to the person that can pay the highest price.  Except the highest price isn't monetary.  It's life.  And death.  

It's a zero sum game.  Because the rich will win again.  They can buy their way out of almost anything.  I worry now more than ever that what I thought was the most difficult fight of my life, the daily battle of living with chronic illness, didn’t start almost 10 years ago.  It’s starting right now.  It’s starting with convincing those in power that my life is worth living.  That even though I am sick, often in pain, and may have more medical expenses than my “normal,” healthy 32 year old counterparts, my life is valuable nonetheless.  

Let me explain how my life works at the moment.  I take no less than seven pills a day.  On most days, that allows me to function; to wake up, eat breakfast, sometimes take a shower, drive myself to work, work an eight hour day, drive myself home, and make dinner for my boyfriend and I.  But do you know how tenuous that is?  I don’t even have a day grace period.  If I forget to take my medication or run out of my medication, I have one day before I will feel like I got hit by a truck and will barely be able to get out of bed.  Sure, my illnesses are managed, but only by medication and a crack team of doctors.  And because I can afford all that.  Because the moment I can’t, almost 10 years of hard work will have gone completely down the drain.  I will have gone from living life despite illness, to not living at all.  

I didn’t ask for this.  I didn’t ask to part with a large portion of the money I make to go towards medical expenses.  I didn’t ask to literally use all 10 days of my paid time off every year to go to doctor’s appointment after doctor’s appointment, only to take unpaid leave for all the rest.  It’s insulting to suggest that somehow I benefit, or somehow others lose out, because of my healthcare needs.

Then you have rich white boys who think that they can go from rock and roll to politics and they further arguments such as this one – that their pockets are being made thinner because I am sick and they are not.  Someone in my home state of Michigan is vying for a senate seat and this is an argument that they are furthering. That some people are sick and everyone shouldn’t have to pay for it. But isn’t that the whole concept of insurance? You pay into because some day you might need it? 

So basically you’re too rich to be sick? I guess it’s more the case that if you get sick you can afford to pay out of pocket. I can’t. Read my lips: without medication, I...WILL...DIE.  And when that happens, I assume no over-privileged white guy is going to pay for the funeral. 

I think it’s important, though, to acknowledge that there are people out there, celebrities, who are bringing awareness to chronic illness and chronic pain.  However, they have money, too.  When one cancelled her tour,  she was able to do that because she can afford to take time off.  When another got a kidney transplant,  she didn’t have to worry about taking time off for it, or not being able to afford the surgery or the anti-rejection drugs she will need to take for the rest of her life – even if she someday finds herself without insurance.  So when the U.S. Pain Foundation applauds these folks, and states that they prove that “Pain is an Equalizer,”  I call bullshit.  It’s true that just because you’re rich, doesn’t mean that you are immune to pain or illness.  But you certainly don’t deal with it in the same way that someone who has to decide whether to take care of their health or pay their rent does.  They can take the time they need to recover.  Most of the chronically ill people I know cannot.  And that needs to be acknowledged.  

I feel that the current healthcare debate has drawn a line in the sand and made it more apparent who the “haves” and “have nots” are.  And with that comes a profound feeling of being left in dust, of being hung out to dry.  And that no one beyond those in my inner circle care about what happens to me.  That not even my own government cares.  And why should those who will never have to want for anything care?           

What these people fail to realize, is that with this impending decision, we all pay a price.  For me and my chronic peeps, not being able to afford the care we need will mean we are less productive and less able to do the things we want and love to do.  In a lot of cases, it might even mean that we die.  Not having our contributions will diminish us all.  But the rich people that want to turn their backs on the rest of us, a small part of them will die, too, because deep down, they know what they are doing is wrong.  And they simply don’t care.    

What happened to our humanity?  What happened to empathy and compassion?  What happened to helping each other out, out of the goodness of our hearts?  The money you have doesn’t make you a good person.  It’s how you treat others.  It profoundly saddens me that this is what our country has come to.  And I hope that for all of our sakes, we win this fight.  Because if we don’t, we all stand to lose, some of us more than others.  

Thursday, May 16, 2013

Angelina Jolie And Medical Choice



Every once in a while, there is a news story related to health that I feel compelled to talk about.  Angelina Jolie’s op-ed in the New York Times about undergoing a prophylactic mastectomy, My Medical Choice, is one of them.

(It really is a must-read if you haven’t read it yet).

I had to write about her.  I have heard many examples of this over the last few years, but this is the biggest, most visible example.

Women in the 1960s burned their bras.  Maybe ours is the generation who cuts off our breasts – we don’t need them and they’re killing us?

There are a variety of issues I find with Jolie’s case.  I’ll briefly mention them, even though I don’t want that to be the focus of this post.  She’s a celebrity, therefore she has money and resources that many women don’t have access to.  Not only is genetic testing expensive, so is the surgery, which may not be covered by insurance.  She makes the mastectomy sound minor.  Maybe it’s because she wasn’t going through cancer treatment at the same time, but it seems to me that she is minimizing the procedure.  She also had reconstruction done almost right away, whereas many women have to wait years to do it.

Another issue is that discrimination based on the results of genetic testing is a significant concern (Klitzman 2011) – potentially not in Jolie’s case because she is so visible, but for the general population– especially in the areas of insurance and employment (Penziner, et al. 2008).

Since I have not been directly genetically impacted by breast cancer (a non-blood aunt had it, but – knock on wood – my immediate family has not been impacted by it), I don’t want that to be the focus of this post.

I want to talk about genetic testing in general, and what it would look like for lupus and rheumatoid arthritis, in particular. 

I recently wrote an article for HealthCentral about my sister’s risk of lupus and RA.  In that article, Hoping My Sister and I Share Everything But My Illnesses, I talk about the dilemmas that come with having a disease that most likely has some genetic component to it, and what this means for immediate family members. 

My sister is 18.  She, as of now, has no symptoms or medical conditions that would suggest that she may have lupus or RA.  As of yet, there are no medical tests that will give definitive answers about predisposition to lupus and RA, as there are for conditions like Breast Cancer and Huntington’s Disease.  But she could potentially undergo diagnostic tests to see if she has a positive ANA, elevated Rheumatoid Factor and Sedimentation Rate, etc., which could point to having the disease, but not yet being symptomatic. 

But what would this do for her?  And what would it do to me? 

As I said in the HealthCentral post, she was very young, just 13, when I first got seriously sick five years ago.  While she knows what illnesses I have, and generally how I feel, I haven’t gone into detail with her about the litany of symptoms and problems that lupus and RA can create.  Every time she is tired, or has an ache or a pain, I don’t want her to automatically assume that she has lupus or RA.

I personally think, since she is young and healthy, that it is needless to make her worry about something that likely may never be an issue for her.  

But the era of genetic testing has opened up a brave, new world. 

The availability of genetic tests is growing by the day.  There are currently around 1,000 tests available.  This means that we are faced more and more with decisions regarding our bodies and their future viability.

We can learn more about ourselves and our bodies than ever before.  But what do we do with that information?  Do we wield it for good or evil or a combination of the two? 

In this case, what you don’t know can hurt you.  However, what you can find out can hurt you both physically and emotionally. 

For instance, if someone has a parent with Huntington’s Disease, they might get the disease, but they also may never get it (to be precise, a child has a 50% chance of getting Huntington’s Disease if they have one parent who is affected by the disease).  So how do you live with that information?

Maybe if you have a plan: If I test positive, I’m going to do X.  But if you get that information and you don’t have a plan, then what?

We all have choices to make, both those who are already chronically ill and those who are not yet sick.

For Angelina Jolie, because she was found to carry the BRCA1 mutation, it was determined that her risk for developing breast cancer is 87%, and 50% for ovarian cancer.  For her, odds that were just too great.

Some of the positives of getting genetic testing are that the results might make you less worried about getting a disease, and that you can change your lifestyle and try to minimize your risk of getting a disease (FamilyDoctor.Org 2010).  In Jolie’s case, that meant having a prophylactic mastectomy to decrease her risk of breast cancer from 87% to under 5%. 

Some negatives of genetic testing are that the results might make you more worried, and they might cause stress and guilt, and could cause family problems, and could lead to discrimination (FamilyDoctor.Org 2010).  In the case of Huntington’s Disease, those who undergo predictive testing have been found to have an increased risk of suicide (Robins Wahlin 2007).

This issue is not clear cut.  And it is a personal choice; both whether you choose to get the information provided by genetic testing at all, and what you do once you have that information.

Since this is a personal choice, and should be respected as such, just as people have the right to know, they have the right not to know, as well (Bortolotti and Widdows 2011). 

Ignorance may not be bliss, but for some people, it is more worth it to go about their lives without being constantly worried.  For others, getting tested might provide peace of mind.

I think Angelina Jolie made a brave choice.  I commend her for opening up about her journey.  She picked hopefully having the years her mother didn’t have over keeping a part of her body that could potentially kill her.  She is not the first, nor will she be the last woman, to make this choice.  I know there are women out there who think a prophylactic mastectomy is too extreme.

And I am not sure what I would do if I were in that position, about testing and what comes after.  Just as I am not sure what I would do if the landscape of genetic testing looked different.      

If there were genetic tests available to predict the onset of lupus and RA, or even other autoimmune diseases, would I urge my sister to get tested?  Ultimately, it would be her decision.  It’s her body and her choice.  That might sound cliché, but that’s the reality of the situation.

And that is something we cannot lose sight of.  Just because we have medical technology available, do we have to use it?  Should we be offering predictive testing for diseases for which there is no cure?  Or do we offer hope to those who feel empowered by having that information? 

References

Bortolotti, Lisa, and Heather Widdows. 2011. “The Right Not to Know: The Case of Psychiatric Disorders.” Journal of Medical Ethics 37 (11): 673-676.


Klitzman, Robert. 2010. “Views of Discrimination among Individuals Confronting Genetic Disease.” Journal of Genetic Counseling 19 (1): 68-83.

Penziner, Elizabeth, Janet K. Williams, Cheryl Erwin, Yvonne Bombard, Anne Wallis, Leigh J. Beglinger, Michael R. Hayden, and Jane S. Paulsen. 2008. “Perceptions of Discrimination Among Persons who Have Undergone Predictive Testing for Huntington’s Disease.” American Journal of Medical Genetics B Neuropsychiatric Genetics 147 (3):320-325.

Robins Wahlin, Tarja-Brita. 2007. “To Know or Not to Know: A Review of Behaviour and Suicidal Ideation in Preclinical Huntington’s Disease.” Patient Education & Counseling 65 (3): 279-287.