NIH and the Government Shutdown

Across my news feed in Facebook  this article shows-

8-Year-Old Cancer Patient Among Those Affected By Government Shutdown

October 3, 2013 5:35 PM
maddie major

BALTIMORE (WJZ) — Every week, hundreds of patients, including children, are admitted to new clinical trials at the National Institutes of Health. Now many are losing hope as the government shutdown continues.

About 200 new patients are admitted to these trials every week. About 30 of them are children. Of those, about ten of them are cancer patients.

 Maddie Major doesn’t look sick at all, but this week, her leukemia came back for the fourth time.

“I hate when people cry,” Maddie said.

But her mother, Robyn Major, has reason to. The clinical trial Maddie now needs cannot be approved by the FDA because the FDA has been shut down with the rest of the federal government.

“I am completely blown away by how callus and how carelessly they’ve just kind of used us as their pawns to push their own agenda,” she said.

Robyn says Maddie’s cancer, pre-B cell ALL, is curable in 90 percent of the cases. Her daughter is in that 10 percent category. Six months ago, she went through a clinical trial that worked. Because of her relapse, she’s scheduled to have it again. Now, it’s up in the air.

“For Maddie, this is truly life or death. This isn’t a game. This isn’t pushing one ideology over another. This is my baby’s life,” Robyn said.

Sick people hoping to join clinical trials at NIH are now being turned away because 75 percent of all NIH employees are being furloughed. Those already enrolled in clinical trials will still receive care.

“The lab animals at NIH are being taken care of, but if you have pediatric cancer, you aren’t,” said Congressman Andy Harris. “I would hope we c ould agree that they should be.”

While they act like children, they should take a cue from from child and act like her. She’s eight, and she is showing maturity beyond any of them,” Robyn said.

“Love. My only answer is love,” Maddie said.

Just two weeks ago, Maddie and her parents visited Capitol Hill, urging lawmakers to provide more funding for pediatric cancer research.

About 75 percent of NIH’s employees, or about 15,000 people, have been furloughed.

When you have an aggressive form of cancer, you can’t wait… you don’t have months or weeks to wait around to make decisions… to act. In 2009, my 35 year old, career firefighter husband was diagnosed with stage four melanoma. NIH was our last good hope to try to fight. NIH was making huge strides in melanoma treatment and had some treatments which were way more successful at giving a lasting remission. Unfortunately for us, in the month’s time period that it took from visiting to being enrolled in the research study to having the procedure, his tumors had spread in his intestines and he was no longer eligible for treatment at NIH (unfortunately, you had to be a healthy stage 4 cancer patient to be in research trials and the tumors disqualified him). ONE MONTH. THIRTY DAYS.

Had we gotten to NIH sooner… had his cancer been caught just a month or two sooner… he might be alive today. He might have seen his son start kindergarten.

When you are talking about aggressive cancer… DAYS can make a difference.

I can’t help but think what my husband would think of Congress and our President displaying their worst toddler behavior… temper tantrums… “I hate you’s”… no sharing… no communication… This almost infantile behavior has led to a government shutdown. For some people, the shutdown, literally will make the difference between life and death.

NIH is an amazing facility.  I remember when we visited and met with the staff.  The facility was amazing.  It was the most un-hospital like hospital we’ve ever been in.  They had great resources, including a house that family could stay in while their loved one was receiving treatment.  I remember the optimism, the hope, the passion that staff had- all of the staff.  At other hospitals we experienced good and bad staff.  At NIH every employee we encountered… from phlebotomy to doctors, to day nurses to night nurses… every single employee was topnotch!!  I also remember waiting for John’s surgery to be completed.  And instead of good news, we were pulled into a private room and told of the seed tumors that had spread to his intestines.  In that moment of what should have been utmost darkness, I remember the doctor telling me and my father, that it wasn’t the end.  That if we could get the cancer under control through chemo that we could come back.  I remember springing into action… making phone calls, scheduling appointments.  I remember getting called back to see John and he was crying because the doctor had told him about the seed tumors and how he couldn’t be in the study with the tumors in his intestines.  I remember comforting him and telling him that we weren’t giving up.  I remember the doctors said he’d be in NIH for I think a week or more for recovery.  I remember John doing everything he could to recover as quickly as possible, so we could move on to plan B and beat the cancer.  NIH has some of the best and most talented doctors and researchers working together with amazing resources.  So many advancements in cancer treatments have came from NIH. It is a travesty to see it considered non-essential.

Furthermore, when someone doesn’t get a paycheck, doesn’t know when he/she will be getting a paycheck, and can’t work… it is only natural to look into other employers. It would be sad to see talented doctors and researchers move to other facilities. There are also quite a few dedicated doctors, nurses, and other staff at NIH who are working and not receiving paychecks currently. This is a travesty as well.

Childhood cancer is so sad. To lose my husband at 35 was devastating and has turned my life upside down, but to lose a child- a youngster with so many dreams, opportunities and with such life to live is the ultimate tragedy of cancer. Maddie Major and her family, and all of the other families who’s last hopes have been put on the line, will be in my prayers.

I hope this country comes together for the good of everyone, but my heart especially breaks for those who are trying to get enrolled in clinical trials at NIH and can’t. While their lives are put on hold they very well may die, or have their diseases progress beyond the tiny window of opportunity for treatment.

John- forever loved… forever missed.

About Mary K. Smith

I was widowed in July 2009, when I lost my beloved husband, John, to melanoma. Cancer SUCKS. We have a young son who was just a year old when his father died. I live on a small farm in Maryland which is home to horses, cats, and a dog. I started this blog as a way for me to heal, a way to remember my husband, and eventually I'd like to share it with our son so he can see the love that his father had for him, the love that we had for each other, what a great person his father was, and how hard his father fought to live.
This entry was posted in Life after John's Death, Stage IV, Stage IV melanoma and tagged , , . Bookmark the permalink.

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