Share Your Organ/Tissue Donation Story

Do you have personal experience on either the donor or recipient side?  Please share your story – positive, negative, or otherwise!

E-mail your story to chris@thetruthabouttissuedonation.com

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Why Am I Speaking Out Against Tissue Donation?

I’ve had many people ask me recently why I’m being so vocal against the tissue industry.  I assure you – it is not because I want to see the industry shut down.  It is quite the opposite – I want to see the industry flourish to help even more people.

We are scared of the dark because of all the stories we’ve heard throughout our lives about all the evil lurking in the shadows.  We are afraid of the woods because of all the tales we’ve been told of the horrible monsters waiting just beyond the trees.  Despite this, at some point in our lives, we will have to sit in the dark and we will have to walk through the woods.

What if we could shine a light in that darkness?  With no shadows to hide in, the evil would be gone.  What if we could see behind the trees in the woods?  We would know which monsters are waiting and how to prepare for them.  We would no longer fear the dark and we would stroll through the woods without a care.  In fact, we might even do it more, knowing there are no dangers to be found.

It is the same with tissue donation.

Right now, the industry is operating in the dark shadows.  Nobody knows what really goes on, so far too many people choose not to donate.  Those that do choose to donate do so without looking behind the trees in the woods, blindly trusting in what happens next.  What if we could shine a light into that darkness and eliminate the monsters behind those trees?  We could see what really happens…and the incredible good that can come of tissue donation.  By doing this, we can actually increase donation.

By giving families the OPTION to learn as many details about the procedures as they’d like, we’d be giving them the power to truly decide what happens.  By giving families the OPTION to choose for-profit or not-for-profit, we’d be giving them the ability to choose if someone makes money from their loved one’s gifts.  By giving families the OPTION to choose the final use of the donated tissue, we’d be giving them the ability to choose the final use of their loved one’s tissues.

Will some families choose to hear all the details?  Yes.  Will some families choose to go the not-for-profit route?  Yes.  Will some families choose to only have the tissues used for life saving (and not cosmetic) uses?  Yes.  Will other families choose differently?  Absolutely.  But – we will be giving them the CHOICE.

THAT is what is missing from the industry today.  It is not for you or me to decide whether there should be profits or not.  It is not for you or me to decide what families need to know.  It is not for you or me to decide whether tissues should be used in cosmetic surgery or life saving surgery.  It should be up to the FAMILIES.

That, ladies and gentlemen, is why I’m speaking out against the industry, shining a light into the shadows, and calling out what is behind the trees.  I am fully aware…painfully aware…that my actions my cause some not to donate.  But I am also fully confident that if enough of us speak up, we CAN change the industry and, in the long run, increase donation far beyond what it is today.

 

 

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What Needs to Change?

This is, by far, the most common question I’m asked about why I’m speaking out against the current state of the tissue industry.  The answer is simple:

1) Honesty/Full Disclosure.  Families must be given the opportunity to learn more about the specific procedures that may be done.  Instead of a simple ‘do you consent for the procurement of skin’ the families need to be told ‘There are a few different possibilities for how your loved one’s skin may be procured.  Would you like to learn more about the different possibilities or would you prefer to consent or decline consent without learning more about the specifics?  If the families choose to learn the specifics, the procedures must be explained in a way the family can understand.

2) Choice – Medical vs. Cosmetic.  Families need to be given the opportunity to choose between donating tissues for medical need and cosmetic purposes.

3) Choice – For-Profit or Not-For-Profit.  Families must have the ability to choose whether their loved one’s tissues are processed and sold by a for-profit processor or are processed by not-for-profit processor.

4) Tracking.  Every piece of tissue bought, sold, or used must be given a bar code that can be used to track the tissue back to the processor and donor.  That way,  if there are safety concerns, the recipients of the tissue can be located and contacted. It is absolutely absurd that these things can’t be tracked!  We can find out who bought infant car seats that are recalled but we have no way of tracking human tissues for transplant.

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The Dark Side of Tissue Donation now in paperback or eBook!

Told from the perspective of an industry insider and donor father, The Dark Side of Tissue Donation provides a unique, emotional, and disturbing perspective on tissue donation. Chris shares what the tissue banks don’t want you know; information that has for too long been too taboo to speak of, but information that every donor family must know before the choice to donate is made. You’ll learn what it’s like to be a donor father procuring tissues from other donors. You’ll find out what it takes to make it through a day in the life of a procurement technician. You’ll also be exposed to information that only those within the industry have been allowed to know; what really goes on behind the closed doors of operating rooms and corporate board rooms. Profiteering, a body’s worth, industry abuses, informed consent, organs and tissues for illegal immigrants, minorities and donation – nothing is too controversial and Chris covers it all. Get ready to find out what really happens in The Dark Side of Tissue Donation.

Just head to The Dark Side of Tissue Donation to order your eBook or paperback today.

eBook: $1.99 Paperback: $9.99

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The Dark Side of Tissue Donation

For as long as tissue banks have been in existence there has been a debate over which is a better steward of the gift; a for-profit agency or a not-for-profit agency.

At the heart of the debate is the fact that no donor family likes the idea that someone may be getting rich from the sale of their loved one’s organs and tissues. The family is donating the gifts for purely humanitarian reasons; their hope is that someone else’s life will be saved or at the very least made better by the gifts so graciously donated.

This is how my wife and I felt when we chose to donate our two-year-old daughter’s organs and heart valves on March 1st of 1999. At the time our number one goal was to create something positive from the death of our daughter; to help someone else live by giving our daughter’s organs and tissues. We simply assumed that whoever used our daughter’s gifts would be good stewards of the gifts meaning that they would be procured appropriately and distributed appropriately.

The University of Wisconsin Hospital and Clinic’s Organ Procurement Organization (OPO) harvested our daughter’s liver, pancreas and intestines and Allograft Resources (which was a not-for-profit tissue procurement organization at the time) harvested her heart valves.

After our daughter’s death and subsequent donation we had the incredible chance to meet the recipient and her family. We were able to see first-hand the good that can come from organ and tissue donation. Our single goal was achieved; through our daughter’s gifts helped save another family from going through what we were going through at that very moment – planning for the funeral of our baby girl.
I believed in organ and tissue donation so strongly that shortly after my daughter’s donation I was hired by Allograft Resources as a member of their procurement team. Over the years, though, Allograft Resources was essentially “bought” by the organization that processed the donated tissues that Allograft Resources recovered – Regeneration Technologies Inc. (RTI) of Alachua, FL (a for-profit company). As Allograft Resources began changing hands, the focus of the “business” began changing from helping donor families to helping the company’s bottom line.

Soon after the acquisition of Allograft Resources RTI became a publicly traded company. That is when things really started going down hill. For example LifeCell, a skin processing company, began handing out “Golden Dermatome” awards (a dermatome is the surgical instrument used to procure skin) to the people that recovered the most skin per donor. Instead of being careful to follow the wishes of the family our procurement teams competed against each other to see who could recover the most skin. Donors were reduced to square footages of skin.

Another example of “beefing up the bottom line” was the introduction of “research” tissue procurement. Families are told that tissues not suitable for transplant may be suitable for use by researchers searching for cures for diseases and conditions. What the families weren’t told was that research tissues may include the procurement of an entire foot, an ear, a nose, a spine – virtually anything (especially if the donor was to be a direct cremation).

By the time a procurement team was done with a donor, the tissues could be sold for a total that sometimes topped $100,000 (from what limited information I could gather – tissue banks are tight-lipped about the values of human tissue).

I began investigating where the money trail led. The emotion behind this charged topic is simple: no donor family wants to think that some company executive is driving around in a Jaguar purchased with an exorbitant salary earned from the sale of donated organs and tissues. Unfortunately, though, that’s exactly what is happening.

In reviewing RTI’s Securities and Exchange Commission filings and stockholder reports the true magnitude of the money being earned by this one company alone is very obvious.

In 2003 RTI listed net revenues at $75.5 million and in 2004 that number climbed to $92.7 million. In 2003 executive compensation packages added up to over $1.4 million dollars with the CEO earning over half a million dollars alone.
In 2005 available bonuses for the executives range from $250,000 for the CEO to $90,000 for the VPs and total $710,000 together. This is in addition to the 4% raise that was approved for each executive’s salary.

As if this wasn’t enough, RTI set up a “retention and severance agreement” designed to “maintain stability” following the company’s announcement that they’re exploring “strategic alternatives to enhance shareholder value”. The retention and severance agreement would come into play should the company be sold if the “strategic review” leads to the sale of the company.

Over $1.7 has been set aside to reward employees for staying with the new company as a retention bonus or to be paid as severance pay should they lose their job in the shuffle.
At the heart of the matter is one, simple fact – everyone is making money off the donated organs and tissues and not one cent finds its way back to the donor or donor family. Procurement teams are paid, the facilities where the procurements are taking place are paid, procurement agencies’ operating budgets are paid, shipping to processing labs is paid, processing costs are covered and the final cost to the end recipient is charged by the hospital who is charged by the processing lab for that particular tissue. Even the nurses and doctors in the transplant surgery are paid. Thousands of people make their livings (and damn good livings) off gifts so graciously donated by humanitarians. How is this fair?

There is a federal law on the books that makes it illegal to sell human organs and tissues but it does allow for the recovery of “necessary costs and fees” relating to the procurement, processing and transplanting of the donated tissues.
It is time that the greedy for-profit and not-for-profit organ and tissue banks stop hiding behind this law and start paying at least something back to the donor family.Keep in mind; no donor family will ever say that they hoped to realize a financial gain by donating their loved one’s tissues. Everyone, like me, has deeply personal reasons for donating. However, that doesn’t mean that everybody but the family should make money from the gifts.

My proposal is simple; require tissue banks and organ procurement organizations to pay for an “average” funeral for the donor (with “average” taking into account the geographic and economic region’s average funeral costs). The family can choose a more elaborate funeral but the OPOs and tissue banks would only be required to pay out “average” costs. The family should also be given the opportunity to use the payout to fund any memorial or charity they wish (such as a bench in the park or donation to hospice care etc.).
This would end the hotly contested and often debated for-profit versus not-for-profit status. In the end, everyone in the business turns a profit off the gifts so graciously donated. It is only right that the family receive a portion to either cover the funeral or to be used charitably. Although it is a statement that you will probably never hear voluntarily from a donor family, if everyone else is making money from our loved ones’ gifts we deserve something too.

I challenge our lawmakers to introduce legislation (it must be done at the federal level to counteract the federal law against selling human organs and tissues) to require tissue procurement organizations and organ procurement organizations to give the donor family a check for the amount of money the average funeral (and expenses) in the area costs. The family may either use it to fund the funeral or use it for charitable purposes (or both). This process should be facilitated by and administered by the funeral homes to avoid what will most certainly be the main thesis of those opposed to such a law – that families will kill off their family members for monetary gain. With the restrictions placed on the uses of the money and the funeral homes regulating where it goes this should be a moot point.

Click here to conact your legislators and ask them to end this cycle of abuse of mankind’s most generous of gifts.

For more information on organ & tissue donation as well as the abuses that happen within the industry, check out Chris’ new book, The Dark Side of Tissue Donation by clicking here.

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