Organ Donation and How it Touches Orange County Lives
MIDDLETOWN—April is Donate Life Month and for most people it’s about as personal as checking a box when they go the Department of Motor Vehicles (DMV) to get or renew their license.
Ellen Dunn, a Scotchtown resident, was in such a DMV in Middletown on April 14 with a table full of pamphlets, pens, and pins talking to Orange County residents about the importance of checking that box.
Dunn is a double lung transplant recipient whose surgery in 2008 saved her life.
In her late 40’s, Dunn noticed that when she would take walks with her colleagues during lunch she was becoming increasingly out of breath to the point where she could either walk or talk, but not both. She tried exercising more thinking she was just out of shape, but it only got worse to the point where she became bedridden.
After testing, she was told her lungs had layers and layers of scarring, a result of an illness called pulmonary fibrosis that has no cure. She was told she needed a double lung transplant.
She was rushed to the hospital three times as a standby in case the lung going to another patient didn’t work out and she could use it.
On the fourth and final call, she finally got a double lung transplant.
“At the time, I wasn’t aware of how low the odds were that I would get that transplant. People die every day waiting for transplants of any type,” she said. “Fortunately, I did get one.”
Dunn is now a member of the Orange County chapter of LiveOnNY, a group of about 25 volunteers who raise awareness about the need for organ donation in Orange County.
On one of the displays on Dunn’s table are some statistics about organ donation in New York. While New York has a higher number of registered donors than other states, it has the lowest percentage of any state when compared to its population.
Dunn is not sure why New York is the 50th out of all 50 states, but speculates it has to do with the transient lifestyle of people here.
“We’re very busy. We have a big confluence of people from all over,” she said. “In some countries, it [organ donation] is not as federally regulated [and safe] as it is here.”
She pointed to some positive things in the state Senate that might be changing that however. It recently passed a slew of bills that encourages people to become organ donors and makes it easier for organs to be transported quickly.
One bill would educate high school students about the organ donation process, another would lower the age from 18 to 16 that a person can consent to be an organ donor, and another requires any health care company going through the health benefit exchange to add the option to be an organ donor to their application.
Lauren’s Law, named after a Rockland County heart transplant recipient, makes it mandatory to fill out the organ donation section on a driver’s license application before it can be processed. The law had to be renewed every three years, but the Senate recently passed a bill that would make it permanent.
The Senate also passed a bill that would categorize medical vehicles transporting organs as emergency vehicles in the state to “ensure that those who are in line for the organs they need to survive do not have to watch the minutes tick by as their organs sit in traffic,” said Senator Susan Serino (R-C-I, Hyde Park), the sponsor of the bill, in a release.
The bills have been sent to the Assembly and are currently being reviewed in committee.
Organs in Need
The United States follows international standards for organ procurement like those listed in the Declaration of Istanbul.
The Declaration says organs cannot be bought or sold, donors cannot be threatened or coerced, and “a positive outcome for a recipient can never justify harm to a live donor.”
This is why Americans and people from other countries with long wait lists go to countries like the People’s Republic of China (PRC), which do not follow similar standards.
Ying Crankshaw, a Port Jervis resident, says she was almost of a victim of China’s billion dollar transplant tourism industry, which unlike other countries, operates under government oversight.
Crankshaw is a practitioner of Falun Gong, a meditation and qigong practice that has been persecuted in China since 1999.
In the year 2000 she was arrested three times and held first at Chaoyang Detention Center without any formal charges, and later at Beijing Xinan Women’s Labor Camp for one year. She recalled during one of her illegal detentions she, along with other imprisoned Falun Gong practitioners, were made to do squatting exercises before having their blood pressure checked.
She had a heart exam, an electrocardiogram, a blood test, and a vision screening while in prison as well. She thought it was strange at the time that they were intermittently tortured and given health examinations, but it was not until 2006 when the wife of a Chinese surgeon fled China that she understood why.
According to a 2006 investigative report by human rights researchers David Matas and David Kilgour, the wife, whose name is not given, revealed that her husband had extracted the corneas from some 2,000 living Falun Gong practitioners. “The surgeon made it clear to his wife that none of the cornea ‘donors’ survived the experience because other surgeons removed other vital organs and all of their bodies were then burned,” the report says.
The PRC, which has no effective organ donation system, says it has been using death row prisoners as the main source of its organs, but the number of prisoners on death row is a state secret. Even by the most conservative estimates, that explanation is not likely, one Epoch Times investigative report found.
Crankshaw was lucky in that she had connections in the government through her husband, who worked in the Education Department of the Chinese Embassy in France, and was able to get her out of the country on the condition that she divorce him.
She says it may have also helped that during her one-year prison stint the guards knew who she was—many others did not give their names for fear of retribution to their loved ones so there was no record of them being there.
Watchdog group Doctors Against Forced Organ Harvesting (DAFOH) estimates 100,000 to 200,000 Falun Gong practitioners have died this way since the year 2000.
Many of the recipients of Falun Gong practitioners’ organs are foreigners, says Ethan Gutmann, author of “The Slaughter: Mass Killings, Organ Harvesting, and China’s Secret Solution to Its Dissident Problem.”
“With the growth of the organ-harvesting industry, Liaoning [province] developed a culture and discreet procedures for medical trade with foreigners—on one hand extensive organ tourism from Europe, Japan and North America; on the other, a system for promoting foreign investment in the medical field with Chinese bodies as an export product,” Gutmann wrote in his book.
Crankshaw worries about her friend, who is currently imprisoned in China, and her mother, also a Falun Gong practitioner, who has escaped to Thailand and is seeking asylum in the United States.
“The arrests of Falun Gong practitioners are still very bad. In my hometown in Shandong province, there are a lot of practitioners who are being arrested,” she said.
An Otisville-based film company called Swoop Films made a documentary called “Hard to Believe,” about organ harvesting in China and how it has, or has not, been dealt with by the international community. It will be shown at the Hoboken Film Festival in Middletown’s Paramount Theatre on June 4.
There are 10,000 people waiting for an organ transplant in New York, according to the LiveOnNY website.
David Curtis the son of Middletown resident Cheryl Curtis was waiting for an organ for over a year before he got his. Unlike Dunn however, he never lived to tell his story.
David was born in 1970 with a short appendage for a left arm, a flipper-like right arm, and at three months old, was diagnosed with congestive heart failure because of several holes in his heart.
Through surgery, doctors were able to patch most of the holes when he was 3 years old and he led a relatively normal life for many years. He graduated high school, went to college, had jobs, and played sports.
At 32 he was living in Middletown and thinking about going back to school to become a history teacher when he became sick. He was told he needed a heart and a double lung transplant to survive, and at the end of 2005 was taken to Columbia University Medical Center because his heart was so weak.
When a donor finally became available over a year later, he was too sick to survive the surgery. He was in a coma for five days before he passed away on April 11, 2006.
“He didn’t survive mostly because he waited much too long,” Cheryl said
Cheryl admits she did not think that much about organ donation before her son needed an organ.
After her son passed, she became one of the founding members of the LiveOnNY Orange County chapter, going to events, presenting at clubs, and holding fundraisers.
“If people would just sign up … You’re going to die eventually anyway and your organs are going to wind up in the ground rotting. If you choose to be a donor, you can save eight lives,” she said. “You can leave this world a hero.”
This is the 10th anniversary of David’s death and Cheryl has organized a Roast Beef dinner at the Middletown Elks Club on June 7 in his memory, the proceeds of which will go HelpHOPELive, a non-profit that helps those on the waitlist and those living with catastrophic injury or illness fundraise for expenses insurance does not cover.
This organization helped her afford to be with her son when he was taken to the University of Pittsburgh Medical Center for his transplant. “Without those kinds of donations and that kind of organization, it just wouldn’t have happened,” Cheryl said.
To contact this reporter, email firstname.lastname@example.org
A previous version of this article incorrectly capitalized HelpHOPELive. The non-profit helps people on the wait list for a transplant and those living with catastrophic injury or illness. They help individuals fundraise for their unmet medical needs. Epoch Times regrets the error.