Steffanie Collings, namesake of legislation to require insurance coverage for routine health care costs for patients who undergo clinical trials, died today, a day after the bill passed the state Senate.
The 18-year-old Noble girl was told by her father Wednesday that the bill, called Steffanie’s Law, had passed the Oklahoma Senate.
“Steffanie knew before she passed,” her father, Monty Collings, said.
Steffanie Collings had undergone care that was part of a clinical trial, but some of the routine health care costs such as lab tests and doctor’s visits that normally would be covered by insurance were not covered in her case as well as other patients undergoing clinical trials that test new medical treatments.
Although battling a brain tumor that had left her weak and in a wheelchair, Steffanie came to the state Capitol in January and spoke in support of the legislation.
“Steffanie went to be with our Lord around 1 a.m. this morning,” her father wrote in an e-mail to family friends. “She was truly a soldier for Christ! She will be dearly missed, and we are comforted knowing that she is with God singing, dancing and hanging out with her grandparents in Heaven.”
“The courage and compassion of the entire Collings family inspired us to seek help for them wherever it might be found. Steffanie in particular was one of the bravest people I’ve ever met,” said Sen. Andrew Rice, D-Oklahoma City, the author of Steffanie’s Law.
Memorial contributions can be made to the Truth Church in care of the McClain Bank in Noble or to the Oklahoma Oklahoma Brain Tumor Foundation, 820 NE 63.
Contributions to Truth Church will be used to build a playground, Collings said.
Contributions to the brain tumor foundation will be to help others going through similar situations, he said.
“We agreed it was to help others,” he said.
In February after speaking to a Senate committee that approved Steffanie’s law, Collings said she was in the final stages of her illness.
He said his and his family’s efforts on the legislation would be to help others.
Funeral services will be at 1 p.m. Saturday at Truth Church, 48th and Etowah in Noble, under the direction of McMahan Funeral Home.
A Senate committee passed “Steffanie’s Law” today to require insurance companies to cover medical costs such as lab tests and doctor’s visits associated with clinical trials that test new medical treatments for such things as cancer.
The legislation is named for Steffanie Collings, a Noble teenager who has been battling a brain tumor.
Monty Collings, her father, said the bill will not help Steffanie or the family, which has amassed more than $400,000 in medical bills that their insurance provider will not cover.
“The sole reason I’m putting so much effort in this is so other families won’t be put through this,” Collings said.
He said his daughter, who will be 19 next month, is in the final stages of her illness. She’s been undergoing care using a new treatment that is part of a clinical trial.
Dr. Renee McNall, her physician, said the costs associated with her treatment that her insurer won’t cover are costs that are covered for regular care.
She and Collings declined to name the insurance company.
Dr. McNall said probably two or three health insurance companies in Oklahoma will not cover these health care costs associated with the clinical trials.
During the meeting of the Senate Health and Human Resources Committee, Sen. Brian Crain, R-Tulsa, who voted against the bill, said he was concerned about whether the legislation would have a positive or negative effect on insurance costs.
Sen. Andrew Rice, D-Oklahoma City, author of the bill, said the Senate staff made a study that projects an increase in insurance rates from this proposed law would be less than 1 percent.
The bill now goes to the full Senate.
It passed the committee 5-2.
Sen. Todd Lamb, R-Edmond, co-chairman of the committee, also voted against the bill.
Voting for it were Sens. Rice, Constance Johnson, D-Oklahoma City; Debbe Leftwich, D-Oklahoma City, Jim Wilson, D-Tahlequah, and Patrick Anderson, R-Enid.
I know from personal experience how difficult Social Security’s disability process can be. When my father was 52, he suffered a severe cerebral hemorrhage caused by a rare form of brain cancer. As I took care of the application for him, it opened my eyes to the complicated rules associated with our disability programs.
Each year, approximately 2.5 million people apply for Social Security disability benefits. On average, one-third of them are approved upon initial application, which takes an average of three months for a decision. But for those who are denied and appeal the decision to the hearing level, it can take a long time to receive a decision - much too long, in my opinion.
Right now, there are more than 750,000 cases waiting for a hearing and the average time to get a hearing decision is 499 days. Pending hearings have doubled since 2001. In addition, the number of applications for disability benefits has been extraordinarily high throughout the last seven years and we can expect it to be even higher in the coming years.
Social Security’s disability programs have grown significantly over the last seven years and will continue to do so at an increasing rate as aging baby boomers reach their most disability-prone years. At the same time, Congress has added new and non-traditional work_loads to Social Security’s responsibilities. As a result, the agency is struggling to balance those new responsibilities with its core workloads under tight resource constraints.
That’s why I’ve made improving the disability determination process my top priority. It is our most pressing challenge.
Last year I appeared before the Senate Finance Committee to present an aggressive plan to reduce the backlog and improve the disability process. These new initiatives will eliminate the hearings backlog and prevent it from recurring. Let me give you just a few examples.
The first is the Quick Disability Determination, a process based on a computer model that allows us to screen cases with a high potential for approval. The QDD process has proved highly successful in the Boston region, and the average processing time now is just 8 days. On Sept. 5, 2007, the agency issued a final rule extending QDD nationwide. By the end of this month, every state will be processing QDD cases and about 5% of all allowances will be handled through QDD.
The second, Compassionate Allowances, is a way of quickly identifying medical conditions that invariably qualify under our listings. In these cases, which are often rare diseases unfamiliar to reviewers, allowances will be made as soon as the diagnosis is confirmed. In December 2007, we held the first public hearing on this initiative and will hold three more hearings this year. You can learn more about compassionate allowances at: http://socialsecurity.gov/compassionateallowances.
In addition, Social Security has opened a National Hearing Center. The NHC allows the agency to capitalize on new technologies such as electronic disability folders and video teleconferencing and gives needed flexibility to address the country’s worst backlogs. We also are hiring 175 new administrative law judges, the largest group of new ALJs ever hired by Social Security in a single year. We expect to start bringing these judges on board in the spring.
These are but a few of the many initiatives the agency has under way. When it comes to eliminating disability backlogs, there is no single magic bullet. But with additional staff, enhanced business processes and improved ways of fast-tracking targeted cases, I believe we can improve the disability process and waiting times.
Q: What led you to found the Brain Tumor Foundation, when did it begin operating and how do you fund it?
A: I started the foundation after my youngest son, Cade, died of a brain tumor in 2000. He was almost 2 years old. I was off work for six months while Cade was undergoing treatment. During that time we almost lost everything we had due to the financial impact it had on our family. I wanted to start an organization that would address the day-to-day needs of brain tumor families, financial assistance, education, emotional and spiritual support. The founding date of the foundation is the date my son died, which is Feb. 17, 2000. However, we became an official nonprofit organization in November 2002. Today, we are funded through private individual donations, grants and special events. We are applying to become a United Way Agency this year.
Q: What kind of reception have you received from legislators as a whole about Steffanie’s Law, which would mandate health insurance coverage for people in clinical trials, and how does that compare with 2001?
A: The response we have received has been tremendous. Everyone I have met with is going to support the legislation, and some have personal experience with it. I think this is a very timely subject for everyone because of the health care debate that is now occurring. People are tired of paying for health insurance and then not having it provide the best care for you when you need it most. In 2001, I was so new to the advocacy scene and Sen. Bernest Cain added the language to an American Cancer Society-sponsored bill regarding colorectal screening. The clinical trials portion was sacrificed for the colorectal screening. This time I have been adamant that I wanted it to stand on its own. I won’t have it used as a pawn again for another piece of legislation. There is really no reason to oppose the legislation, and I can prove it.
Q: What kind of opposition have you received to Steffanie’s Law?
A: The opposition to this legislation is just due to people not understanding what the legislation is about and from being uneducated regarding the clinical trials process. The reason I have been given is that insurance mandates drive up the cost of health care for everyone and in turn that causes the number of uninsured to increase. However, that is a lie that is told by insurance companies to scare people. There is plenty of research that shows it does not increase cost to insurance companies. In fact 23 other states have already passed this legislation and they have not had increases in their health insurance premiums nor has the number of uninsured increased due to it. In Massachusetts, Blue Cross and Blue Shield actually supported the legislation. My attempts to work with Blue Cross and Blue Shield here in Oklahoma have been ignored.
Q: Have you heard from lobbyists or insurance industry reps who oppose the law, and if so, what have they said to you?
A: No I have not. I tried to work with everyone on this issue so we can provide assurances and work together to address the issue. But I have been ignored for the most part. Some professional organizations that originally ignored my attempts are now calling and wanting to support the legislation because they have now taken a look at it and understand what we are trying to accomplish.
Q: How do you size up the chances for Steffanie’s Law to pass in this legislative session, and what will you do with the legislation if it fails?
A: I believe it will pass. We have great momentum and I have great faith. I truly believe it will pass this session. If it doesn’t we won’t give up, we will just try again next year and we will keep trying until we make it happen. It is in the best interest of Oklahomans, so hopefully the people we have voted into office will do what is best for Oklahoma and its citizens and will live up to their obligations. I am tired of big business, insurance companies and high paid lobbyists controlling what kind of health care we receive, and I know that most people feel just like I do.
When doctors at Children’s Hospital in Oklahoma City told Steffanie Collings’ parents that her last, best hope to survive the tumor that invaded her brain would be a stem cell transplant, they readily agreed to the procedure.
But then the Noble family’s health insurance carrier balked at a course of treatment it considered to be a clinical trial and not qualified for coverage. The treatment was put on hold.
Eventually, Steffanie underwent the stem cell treatment, but without health care coverage for the procedure and subsequent medical care, the Collings family was left with hundreds of thousands of dollars of debt.
And a cause.
The family is supporting a bill that will be introduced this legislative session to force health insurance carriers to cover routine health care costs for patients participating in a clinical trial. The family will participate in a news conference in support of the legislation at 10:30 a.m. today at the Oklahoma State Capitol.
Steffanie, 18, was diagnosed with a Medulloblastoma brain tumor four years ago and had undergone chemotherapy and radiation treatments. The tumor returned in 2006, and the stem cell treatment was recommended.
Steffanie would be placed in a clinical trial in which new treatments or those different from conventional ones would be provided by health care professionals.
“Since Steffanie’s was a different type of brain tumor than what they covered, they refused all treatments,” said Monty Collings, Steffanie’s father. “The clinical trials were all denied, which created a hardship on our family, as it does on all the families (in similar situations).
An ongoing problem
Since the treatment was not covered by the insurance carrier, the hospital wanted $20,000 up front for the transplant. The family didn’t have the money, so they turned to Nancy Thomason, founder and president of the Oklahoma Brain Tumor Foundation, for help.
After a lot of negotiating, the hospital agreed to do the transplant in May 2006.
“They went ahead and did the stem cell transplant against her insurance company’s denial,” Thomason said. “Ever since then, the insurance company has denied coverage for subsequent care.”
Steffanie’s condition improved, but the insurance carrier’s refusal to cover what her family considered routine care after the procedure has left Monty and Tracy Collings deep in debt.
“What happens is families end up in hardship,” Monty Collings said. “It’s like you have no insurance at all, but we are still expected to pay the premium.”
Steffanie’s situation has become a political quest for her parents and Thomason. They are supporting Oklahoma Senate Bill 1521 for the upcoming legislative session. It would require health insurance providers in Oklahoma to cover routine care costs for patients who are participating in clinical trials.
The legislation, known as Steffanie’s Law, was filed by Sen. Andrew Rice, D-Oklahoma City. Co-sponsor is Sen. John Sparks, D-Norman. House author is Kris Steele, R-Shawnee.
Similar legislation has been adopted in 23 other states, including Arizona, California, Louisiana, Missouri, North Carolina, Tennessee and, most recently, New Mexico.
“We think it’s unfortunate that we’ve got this new medical research that we’re all excited about and behind and offer up to our citizens, and then the insurance carriers won’t cover it,” Rice said. “It’s an important issue.
“I think we’re finding that frustrations on insurance coverage for people who have private insurance is something that cuts across income lines and political affiliations. We just want it to get a fair hearing.”
The coverage gap
There is an ironic twist to the clinical trials health care coverage that hits middle class Oklahomans the hardest, Rice said. Those who can’t afford to purchase private health insurance coverage are covered by state or federal programs such as Sooner Care or Medicaid.
A similar bill was introduced in the Oklahoma Legislature in 2001 at Thomason’s urging, but failed in committee. Thomason’s young son died of a brain tumor almost eight years ago, after her attempts to involve him in a clinical trial in Houston were denied by her insurance carrier.
A spokeswoman for Principal Financial, which was the family’s insurance carrier, said the company could not speak of the specific situation because of federal privacy laws.
Calls placed Tuesday to the industry group, America’s Health Insurance Plans, were not returned.
Linda Sponsler, a spokeswoman for Blue Cross and Blue Shield of Oklahoma, said the insurer had not reviewed SB 1521.
“We typically do have concerns about laws that mandate a specific benefit,” Sponsler said. “The mandates typically contribute to more costs, and that’s for everybody.”
Steffanie’s health has declined in recent months as the cancer has invaded her spine, her father said. She is in a wheelchair, but expects to attend the news conference, he said.
Steffanie graduated from high school last May and intended to pursue a nursing career before her health declined again.
“The thing is with her faith and her positiveness, you can’t get down around her,” Monty Collins said. “That’s what has kept me and my wife going. God has a plan for everybody.”
Added Thomason: “She’s not doing very well now. I hope we can make this happen before she leaves us.”
As representatives and senators debate, discuss and bargain about the Conquer Childhood Cancer Act, I’d like to step up as the parent of child with cancer — and welcome you to our world. Maybe, I’ll give you pause as you head into your next roundtable discussion.
When cancer comes home to any family, it’s devastating. When cancer alights on the tiny shoulder of a child — it’s the death of innocence. At the moment of introduction, your heart stops and is replaced by cement. My chest was so heavy, I didn’t think I was actually breathing. You hold your breath, and begin an incredible balancing act, like you are teetering on the edge of a bottomless cliff. You spend hours/days like that, hoping, praying … In fact, it’s more than a prayer; it’s a soul wish — your very essence begs the universe for mercy.
Then suddenly, wham! — someone shoves you off the cliff. There is no going back. Your life, your dreams, your expectations for your family are gone. You free-fall and can’t imagine how you’ll ever survive.
Over time, you learn to survive the fall; you have to — you are still a parent, and your child is still your child. Children with cancer endure harsh radiation, ritual poisoning with chemotherapy, invasive surgeries and procedures and life-altering side effects. And yet, they are still children. Our children play. They laugh. But mostly, they teach us to embrace life and appreciate the value of a minute. They come with no guarantees — so we must learn to love them completely in each second we are given. We cannot know the quantity of time we are allotted.
Funding research for better cure rates and better cures isn’t just humane; it’s fiscally responsible. Heal our children completely, and with a gentler touch — and society will be the better for it.
My daughter was 17 months old when she was diagnosed with Acute Lymphocytic Leukemia. he endured 26 months of daily chemotherapy. She is now 4 and in remission. She is also brain-damaged — requiring a shunt to survive. She has lost some vision, is osteoporetic, and has an autoimmune disease from the chemo. She is also bubbly, happy, has giant brown eyes, lots of freckles, and is the joy of our lives. It’s up to you to decide if she’s worth supporting the Conquer Childhood Cancer Act. To us, she’s priceless.
