This is a picture of Ryan, Trey, and I moments after Trey’s birth. If you are a parent, you can probably remember and feel that moment, what it was like to become a mom or dad.
In my blogs I often invite you to ‘imagine.’ Imagine getting told that your daughter or son has MPS. That her hands would curl so she can’t do up buttons, that his bones would become increasingly deformed so he would stop growing, that her joints would stiffen so she can’t swing on monkey bars or open door handles, that his heart and airway would become compromised, at some point so severely, that it would likely be the cause of his death by age 20, but not before her cognitive abilities would decline so you would have to watch her forget all the beautiful things she learned, that you remember cheering with excitement over when he took his first step, ate her first bite of solid food, said ‘mama’ for the first time.
You might not be able to picture your child in this situation, but if you have compassion, you can feel that suffering, that pain.
Johnson & Johnson has made is clear that they do not. Or at least they will not.
A number of years ago, Andrew and Ellen McFadyen of The Isaac Foundation discovered some really exciting MPS research going on at the Mount Sinai School of Medicine in New York led by Dr. Calogera Simonaro, and they began funding her research. The drug used in this research is an FDA approved drug called Elmiron (also known as PPS or pentosan polysulfate), manufactured by Johnson & Johnson (J&J). Now, I’ve been hearing about this research through Andy and Ellen for a few years, but the proverbial shit didn’t hit the fan until this past year when data from Simonaro’s research was presented at conferences around the world. I can only speak to the conference I was at, but the impact of MPS families seeing Dr. Simonaro’s research was like being in a riot. It was crazy, emotional, overwhelming, BIG.
Dr. Simonaro showed slides, presented data, and played video footage of rats who began receiving Elmiron in utero and at three and six months of age. I know I will never forget seeing those videos. As a parent to a child with MPS, all we hope for is that our kids won’t get worse. We don’t want them to die. We have accepted where they are at NOW. Although we pray for a cure, just stopping death is a miracle.
So when Dr. Simonaro presented video footage of untreated MPS rats at 6 months old (which equates to an 18 year old in human years, near death in children with MPS) who were so severely affected that they could no longer groom themselves- their teeth had grown out of their mouths, they could no longer stand on their hind legs, they could barely walk let alone run, they had secretions running out of their eyes and ears- to put it bluntly they were a mess, and then she presented video footage of those same rats, who after three months of Elmiron appeared in Dr. Simonaro’s words ‘NORMAL’, parents at the conference went nuts. They began calling families at other conferences, talking to drug companies, people were gathering their money, having secret meetings to try to figure out how to get this drug into an MPS trial NOW and/or how to get this drug into their kids yesterday. If you saw this video footage, your mouth would drop too. I’m not joking. Although Elmiron is not a cure, it sure looks like one. It’s beyond an MPS parent’s wildest dream. It’s a show stopper.
Andy and Ellen, however, had been watching this research unfold for a while. They knew the details of the research, the drug, the companies and doctors involved, and they had already been working on getting a trial funded. At this point you may wonder, if Elmiron is already an FDA approved drug, why would these parents not ask their doctor to prescribe Elmiron off-label? Melissa Hogan has posted a blog about why a trial is necessary and reasons why prescribing Elmiron off-label is problematic. You can read it here.
So now picture Andy and Ellen reaching out to Johnson & Johnson to fund a clinical trial in MPS patients and J&J saying no. To be clear, The Isaac Foundation asked J&J, a company whose worldwide sales for 2012 was $67.2 billion dollars (you can read the report for yourself here: http://www.investor.jnj.com/releasedetail.cfm?ReleaseID=734718), to put forth $1 million dollars that could potentially save the lives of thousands of children. Literally save.
At this point I want to introduce a few definitions, all provided by Wikipedia early yesterday morning:
Empathy is the ability to recognize emotions being experienced by other beings.
Compassion is the ability to understand and feel another being’s emotions. The etymology of “compassion” is Latin, meaning “co-suffering.”
Ethics is “a set of concepts and principles that guide us in determining what behavior helps or harms sentient creatures.”
Morality is the differentiation of intentions, decision, and actions between those that are good, or right, and those that are bad, or wrong. Amorality is variously defined as an indifference toward any set of moral standards or principles.
I also looked up some antonyms for ethics, morality and compassion. They are: indifferent, cruel, merciless, corrupt, immoral, unethical, dishonest, sinful, evil.
After looking up these definitions, I went to Johnson and Johnson’s Canadian website (http://www.jnjcanada.com/). They state: Our responsibility is to: our communities, mothers and fathers, doctors, nurses and patients… etcetera, etcetera, etcetera. You can go to the website and see for yourself! Their logo is a picture of a baby (how many of you use Johnson & Johnson’s baby shampoo on your kids’ hair and how many of you remember your parents using it on you as a kid?). If you click on over to their ‘Our Values’ page (http://www.jnjcanada.com/our-values.aspx), it’s impossible not to laugh because of the irony. J&J claims to be socially responsible, good citizens, they claim to have a moral compass, respect, and they claim to offer equal opportunity. I also clicked further to read their Credo.
The unjustness, the dishonorable and shameful way in which Johnson & Johnson has treated our kids and our families led me to ask myself: how can they act like this and still sleep at night? And still feel human? I’ve realized it’s because they’ve separated themselves from us. They have created an ‘us’ and ‘them.’ They may or may not have the empathy to recognize our pain, but they do not have the compassion to feel it. ‘This’ would never happen to ‘them.’ They have made us ‘less than’ in their eyes. That is what has allowed them to sleep at night knowing they could likely save our children’s lives, but have instead sentenced them to die. Because we are sub-human. It’s sad. I’m sad to be part of a world that treats other sentient beings with such disregard.
It also makes me wonder: if J&J treats children and families who live with MPS with such disregard, how do they act towards other groups that have also, at least historically, been treated as ‘sub-human’: women, people with disabilities, the elderly, people who are gay and lesbian, people of colour? I also wonder about the doctors involved in this decision. Are they not breaking their oath to ‘Do no harm?’
Johnson and Johnson was given a chance to be a hero, to be a savior. It’s too bad. They really would have been heroes in our eyes. I am glad to know, however, where Johnson & Johnson stands on such issues, for now I know never to buy a J&J product again.
Families affected by the decision of Johnson & Johnson not to fund a trial have taken to social media to show their displeasure and corral their support. The not-so-subtle ShameonJNJ.com tells the story of many children whose families are interested in such a clinical trial and allows others to add their stories. Families are also tweeting to @JNJComm and also with the hashtag #shameonjnj.
This is an issue to watch.