In the town of Sanford, North Carolina, population 30,000, a community is watching one of their own, closely. The fact is, without an organ transplant, 31-year old Ashley Quiñones will die.
Medicaid – Ashley’s only insurer – will not fund the necessary surgery, which is estimated at $250,000. The family has appealed once and been rejected. A second appeal is in Ashley’s future, but the process, of course, requires time.
Our health care crisis? It’s about individuals. It’s about families. It’s about you and me. And it’s certainly about Ashley.
Ashley’s kidney donor has been cleared and ready to go for the past two years, but without the ability to pay for the surgery, Ashley waits. And waits. If Ashley has to wait another year, from everything I understand, it’s unlikely that she will be here.
To be clear, Medicaid has reasons for their position (more on that in a moment), but Ashley’s doctors are convinced that a new kidney will give her another 10 years – at least – of quality life.
It’s worth noting that Ashley has never been able to purchase health care coverage because of a pre-existing condition – Cystic Fibrosis – and therefore, has no option except Medicaid and their decisions. Her life is quite literally in their hands.
Ashley’s Story, and Ours As a Community
Ashley was born with Cystic Fibrosis, which has meant a life of assorted medical interventions, yet a life that includes joy, loving, and giving back. She works two jobs – one teaching English to non-native speakers through the local community college, and another, as a developmental aid to a child classified as “severe profound.”
Ashley’s dream? To use her theater education and training as an actress to help disabled children through drama therapy.
Many of us believe our health care system is rife with problems and inequities. This is only one example. Some of you may say – “yes, but there are rules and tough choices, there are good people whose job it is to make these difficult decisions.”
And I would agree. I can’t imagine the heart-wrenching decisions that must be made in systems that are complicated and costly, and in which clear-cut answers may be not always be evident. But systems are intended to serve people – and not the other way around.
Sometimes, when issues are so complex that we don’t know where to start to repair them, when we lose sight of the human element, when we feel overwhelmed – we surrender to the futility of it all. And we do nothing.
I know that’s the case for me, or has been in the past.
Yet I believe that most of us want to make a difference in the lives of others. We simply don’t know where to begin.
Maybe we can begin with Ashley. Maybe we can begin by picturing our own healthy children, their healthy friends, our healthy selves.
There but for the grace of God, as the saying goes. And I tell myself – maybe we can’t save the world, but we can save one life.
Not one of us, on our own. But many of us, working together.
COTA, and Ashley’s Transplant History
Ashley’s family and community have been working to raise funds. They’ve managed to accumulate just over $16,600 – all handled through the Children’s Organ Transplant Association (COTA), where Ashley is listed for a kidney transplant. COTA is a 501(c)(3) national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. COTA has been in existence since 1986, with a 4-star rating (out of 4) from Charity Navigator.
Having received a life-saving double-lung transplant in 2001, Ashley is in COTA’s system for life. You can read more about Ashley on their site, and view the progress of donations on her behalf.
In the interest of full disclosure, the medications Ashley takes to keep her lungs healthy and prevent her body from rejecting them place a tremendous strain on her system – specifically, her kidneys. And those hard-worked organs are at the end of their rope.
It is the fact of the lung transplant and a condition known as Bronchial Obliterans Syndrome (BOS) that Medicaid is, to date, denying Ashley’s surgical coverage. Her lungs are beginning to show wear, though her doctors believe she will stabilize and do well following the kidney transplant. It is expected that she will need another lung transplant at some point in the future.
The estimated cost of the kidney transplant is $250,000.
And remember – Ashley has a donor cleared and ready to go. What she doesn’t have is the money that’s required.
Big Bucks in Context
So just how much is $250,000? Or, as to what remains to be raised – $234,000?
When you mention a sum like that, it seems beyond comprehension. But what if you spread the cost over 1,000 people? Or 2,000 people? Or more?
- That’s $234 spread over 1,000 people.
- That’s $117 if 2,000 people were to contribute.
Those are amounts that I can fathom. Those are amounts I can put into context.
- $117 is less than an afternoon at the local day spa, after a stressful week of work and kids.*
- $117 is less than three weeks of Venti Lattes, grabbed on your way to the office and likewise, on your commute home.**
- $117 might be the cost to personalize your holiday cards, to purchase the shoes that match your new dress, to send the gift basket you’ve picked out for your mother-in-law.
My point in mentioning these figures is only to put these amounts into context. Everyone I know works extremely hard for their money, and times are tight, tight, tight.
But if 2,000 people could come up with $100 or so? If some of us can donate more – and others, understandably, less – isn’t it worth trying to help?
The fact is – any amount helps. Every dollar brings Ashley closer to returning health.
Our Health Care Crisis Involves People & Families
I’ve written about the health care conversation in this country before, several times. I would like to cite a comment made on one of my health care-related articles, not long ago. It was written by Ashley’s sister, Kelly Miller, whom you may know from her blog, The Miller Mix:
…we struggle to raise [money] for my sister’s kidney transplant that Medicaid is refusing to pay for. However, she couldn’t buy health insurance from any other provider even if she had a steady 40-hr/wk job because of her pre-existing condition. So she can’t buy coverage and the system won’t give her coverage, so she must pay out of pocket for a kidney she’ll take great care of.
Meanwhile, someone who smoked and drank most of their lives, and likely will again, can get a transplant easy-peasy for a fraction of the cost because the system is set up in their favor.
I’ve been unable to get Ashley out of my mind since reading Kelly’s comment, and this post is the result of the past weeks of research, of talking with Kelly, and talking with COTA. I can’t stop asking myself: What if one of my children had been born with CF or some other disease? What if I had no medical coverage to help them?
Finances are tight in my household, as they may be in yours. But I’ve just made my COTA donation, which required only a few minutes. I went directly through Ashley’s contribution page, clicked the DONATE box, completed the process, noted that it was a gift in tribute to my two sons, and they will receive an acknowledgment letter to that effect.
I think it’s the best Christmas gift ever. And I know they will agree.
It took five minutes and a credit card. The amount of my donation was reflected immediately. One minute later, I received my email confirmation, usable for tax reporting.
And here’s the before and after in terms of Ashley’s COTA account:
Should you choose to read more about Ashley, you may do so here. To learn about the donation process in general – by check, money order or online, read here.
As to use of funds, any monies donated to Ashley through COTA go 100% to Ashley’s transplant-related medical expenses. No administrative or other fees are taken out of your donation, which you will read on COTA’s site and they will confirm if you speak to them personally.
Here are a few more details, to direct your donation to Ashley’s COTA transplant account:
- It is critical that you earmark donations for Ashley Quiñones. If you are donating by check, write her name in the memo line of your check.
- If you wish to donate online, you may do so directly from this page and complete the transaction via credit card. This is a standard, simple 4-page process, and VeriSign secured.
- As part of the online process, if you do not wish to receive any mailings or be solicited by COTA in any way, then check the box that says “Do not include my name on the COTA report.”
- You have the option of donating for Ashley in memory of someone or in tribute to someone – in other words, as a gift. As I mentioned above, money I would otherwise spend on something my sons don’t really need will go, instead, to Ashley’s kidney account through COTA.
- When you donate in memory of or tribute to someone, COTA will send an acknowledgment on their letterhead; you have only to use the space in the online process or, if sending a check or money order, enclose a note with the name and address of the person you are honoring and the occasion.
- Your COTA donation for Ashley may also be eligible for matching gifts from your employer. Be sure to check COTA’s Matching Gifts page, use the search function, and see if your employer participates. (I tried it out – there are many organizations that match funds. This could double the amount Ashley will receive toward her transplant!)
- If you don’t find your employer listed, feel free to contact COTA to verify. And don’t forget you can check with your Human Resources Department as well.
- Be sure to provide your email address if you wish a tax receipt to be emailed. Otherwise, your address information will be used to acknowledge your tax deductible contribution.
You may find a few more housekeeping items here, at this FAQ for Ashley Q.
So what will Ashley’s prospects be with the new kidney?
According to her doctors, if she receives the new kidney, her prognosis is excellent. Clearly, the sooner she can undergo the transplant procedure the better; her doctors are optimistic. However, the more time that passes, the darker the outlook.
As to the dialysis issue, Ashley’s overall health must stay reasonably good in order for her to qualify for a second double-lung transplant. If she winds up on dialysis, her overall health will plummet. Most of Ashley’s lung issues are vascular (related to her veins), and the renal system (kidneys) is tied into that.
While Ashley is currently in renal failure, it’s still manageable. She’s continuously adjusting her diet to avoid dialysis for as long as possible. At this point, the doctors are predicting another month or so.
If you want more detail on this, the best person to contact is Kelly, Ashley’s sister (her email is below).
And please see Kelly’s updated post for more information on Ashley’s situation.
What Wouldn’t You Do?
I wasn’t asked to write this post. But I couldn’t have looked myself in the mirror if I hadn’t. Call me idealistic, call me crazy, call me annoying. But I insist on believing that we can make a difference in the world – one person at a time.
What if Ashley were your sister, your daughter, your best friend? What would you do to save her life?
What wouldn’t you do?
Some of you know Kelly, Ashley’s sister. Some of you have already given generously, and I know the family is immeasurably grateful. I will remind you that we teach our children through our actions, and it’s never too late to do so.
As for the fact that it’s the time of year that organizations come calling, and we look for tax deductions, I’d say that helping Ashley get a kidney is a win, all round.
I’m also asking that you share Ashley’s story, and its urgency. This is about Ashley, but also every life that she will touch in the future – for the better. And this is about us, and fighting a growing sense of powerlessness by taking action – one person at a time.
If you decide to donate, you may click the image to the right (Donate Now), which will take you to Ashley’s online Donation page.
More Information on COTA.org
Whatever you decide to do, thank you for reading, and for your consideration.
Update 11/13/11 – If you’re tweeting for Ashley, please use the hashtag #KidneyCutie – and thank you!
Please read this update 12/2/11 – Sometimes the Gods Smile. And please do keep donating!
*A little research showed half-day spa treatments ranging from $180 to $280 in my area.
**Starbucks Grande Caramel Macchiato: $4.25 before tax, in my neighborhood. Venti Latte: $4.50 before tax. Two a day? You’re in the vicinity of $45/week!