Landenberg 11-year-old earns national award for hemophilia advocacy
09/21/2017 03:27PM ● Published by Richard Gaw
From a very early age, clotting factors and infusions have been a part of Cole Hamstead's life.
Cole was born with hemophilia, a rare genetic bleeding disorder that prevents the blood from clotting normally.
But, as his mother, Kim, explained, Cole has never allowed the genetic disorder to hold him back. Instead, he has been motivated to learn from his experiences and advocate for others with hemophilia and other blood disorders.
Cole has been very active helping to educate others about hemophilia, including his classmates at the Independence School in Newark, Del., where he is a sixth-grader.
For three years, Cole and his mother have participated in a genetics presentation for the entire seventh grade class in his school as part of the science curriculum. The presentation provides a detailed explanation of what hemophilia is, how it is treated, and how it is genetically passed in families as an X-linked chromosome.
Kim and her son have made these advocacy efforts a priority so that people have a better understanding about hemophilia, and people with hemophilia have improved access to treatments that they need.
“The advocacy that we've been doing has become a big part of our lives,” Kim explained.
Cole has attended the National Hemophilia Foundation's Washington Days as a representative from Delaware for the last seven years. He has communicated the needs of young people with bleeding disorders to lawmakers like Sen. Tom Carper, Sen. Chris Coons, U.S. Rep. John Carney (who is now the governor of Delaware), and U.S. Rep. Lisa Rochester. When Cole met with Carper in 2013, it was featured in the Capitol Hill publication “Roll Call.”
U.S. Sen. Chris Coons, a member of the Appropriations Committee, recommended funding support for the hemophilia programs at the Centers for Disease Control and the Health Services Resources Administration for the past three years. Cole met with him. In March of 2016, Congressman Carney made a one-minute floor speech in support of Cole to publicize Bleeding Disorders Awareness Month and the unique needs of the community.
Cole has also advocated at the state level in both Delaware and Pennsylvania.
In 2013, Delaware lawmakers approved SB 35, which capped the monthly costs of specialty tier prescriptions, helping not just sufferers of bleeding disorders, but people with many other illnesses as well.
Cole attended Harrisburg Days in May of 2016 and April of 2017 in an effort to retain funding for the Hemophilia Treatment Centers in Pa., and to support SB 841. He met with numerous Pennsylvania lawmakers, including State Sen. Andrew Dinniman, State Sen. Thomas Killion, State Rep. Chris Ross, State Rep. Eric Roe, State Rep. Scott Petri, and State Rep. Duane Milne. In October of 2016, he testified in a hearing on SB 841, The Cost and Affordability of Prescription Drugs legislation.
In 2016, Cole met Vice President Joe Biden, a Delaware native, at a golf clinic for children with hemophilia, and was able to share with him details about what it's like to grow up while managing hemophilia. Biden invited the kids he met that day for a tour of Air Force Two.
Cole and his cousin, Devin, also created a walk team named Cousins for a Cure to raise funding for hemophilia research and programs. They have raised more than $125,000 for the bleeding disorders community through garage sales, lemonade stands, bake sales, a school dance, and collecting donations from family and friends.
As a result of all this advocacy work, in late August, Cole traveled to Chicago with his mother, his grandparents, and his aunt's family to receive this year's Ryan White Youth Award of Excellence. This award is presented to a young person under the age of 25 who has helped educate others and raise awareness and understanding about bleeding disorders. The award honors the memory of Ryan White, the Indiana boy who suffered from severe hemophilia and contracted AIDS through the infusion of contaminated clotting factor in 1984. White brought national attention to hemophilia and its complications, and helped change people's attitudes about men and women with the disease.
U.S. Sen. Thomas Carper wrote a letter of recommendation for Cole, which included the following:
“I have known Cole for the past seven years and during that time he has proven to be influential in bringing awareness to bleeding disorders. I believe Cole's dedication to bettering the lives of those with bleeding disorders, as well as educating the public on these disorders, represents everything for which the award stands.”
Hemophilia primarily affects males and is rare―one in 5,000 live male births in the U.S. have Hemophilia A, which is the type that Cole has.
Before Cole was born, the Hamstead family had no idea that hemophilia ran in the family. Kim and her sister, Jennifer, were both carriers and did not know it because there had been no history of hemophilia in the family. While hemophilia can be the result of a genetic mutation, it is usually the result of family genetics.
When Cole was diagnosed with hemophilia at the age of five months, it was a shock. The family underwent genetic blood testing, which revealed that Kim was a carrier. Kim's sister, Jennifer, was pregnant at the time Cole was born. Jennifer was also having a baby boy―Devin was, like Cole, diagnosed with Hemophilia A very early on.
“You can be a carrier and have no idea,” Kim explained. “We had this deficient X-chromosome.”
There are three kinds of hemophilia: Hemophilia A, also called classic hemophilia, which involves a clotting factor VIII deficiency; Hemophilia B, also called Christmas disease, which involves a clotting factor IX deficiency; and Hemophilia C, which is extremely rare, and involves a clotting factor XI deficiency. Cases of each type can be mild, moderate, or severe, depending on the protein deficiency. Kim explained that when a clotting factor is missing, the entire clotting process stops at that point, which leads to the problems that the hemophilia sufferer will encounter.
The primary symptom of hemophilia is uncontrolled, often spontaneous bleeding in different areas of the body. A bleed can be external, but more concerning are bleeds that are internal. The amount of bleeding depends on the severity of hemophilia. Internal bleeding, which commonly occurs in the spaces around joints, frequently results in pain and swelling and, if left untreated, can cause permanent damage.
As recently as the 1950s, people with hemophilia lacked adequate treatments to live normal lives. Back then, they received whole blood or fresh plasma, a component of blood, that was used to stop serious internal bleeding. During this time, most people with severe hemophilia and even some people with mild or moderate forms died in childhood or early adulthood because the whole blood or fresh plasma did not have sufficient amounts of Factor VIII or Factor IX proteins to stop serious internal bleeding.
By the 1960s, it was discovered that the sludge that sunk to the bottom of thawing plasma was rich in Factor VIII―producing enough Factor VIII, in fact, so that it could be infused to control serious bleeding.
Factor Concentrates were introduced in the 1970s as blood donations of hundreds of people were pooled together. The freeze-dried powdered concentrates could be kept at home, a revolutionary development in hemophilia care. Unfortunately, these same blood products carried blood-borne viruses that could be dangerous and even deadly for hemophilia patients.
The Factor treatments have evolved since then so that they are now synthetic, and do not contain human proteins, so they are safe from blood-borne illnesses. These Factor treatments are infused into a vein, and are effective for between 24 and 48 hours.
“We have wonderful, safe treatments that can make life feel very normal,” Kim said. “The Factor treatments were life-changing for a lot of people.”
In Cole’s case, these treatments allow him to lead a normal life―he can play at recess, take part in gym class, and even play sports.
“We pick sports that are good for him like baseball, tennis, or golf,” Kim explained.
According to Kim, the medication and treatments that are now available to people with hemophilia are wonderful―but also extremely costly.
That’s why the advocacy work is so important. Cole and Kim play a part. The National Hemophilia Foundation has been advocating for people with bleeding disorders since 1948, and a major initiative has been trying to make sure that people have access to comprehensive care and safe treatment therapies.
For those affected by bleeding disorders, access to affordable, quality health coverage has been difficult to obtain and maintain.
“There are always insurance challenges,” Kim explained.
The Affordable Care Act marked an important step toward removing some of the obstacles that people with hemophilia face by eliminating both the lifetime and annual limits on essential health benefits. The Affordable Care Act also eliminated for all patients the possibility that pre-existing conditions could be used as a reason for insurance to be denied. The Affordable Care Act also extended the coverage for adult children up to the age of 26 under their parents' health insurance plans.
While these are positive developments, Kim is concerned about Cole’s access to the treatments that he needs throughout his life, and she is also concerned about the thousands of other people who have hemophilia.
In a letter that she wrote advocating for hemophilia patients, Kim explained: “Since his diagnosis, we’ve tried every medication and treatment available to help give Cole as normal a life as possible. Today, Cole is prescribed a specific “specialty” biologic to keep his condition under control. This is a drug for which there are no generic alternatives. As a result, our medical bills are extremely expensive.”
She continued: “I’ve spent the better part of the last 11 years advocating for people like my son who need better access to prescription medications through affordable insurance plans. Even with health insurance safeguards enacted through the Affordable Care Act, the cost of prescriptions is skyrocketing.”
In the same letter, Kim encouraged Pennsylvania lawmakers to do what Delaware lawmakers did and approve legislation that would limit out-of-pocket costs on specialty medications.
“No one should have to choose between paying for life’s necessities and paying for their prescriptions,” she wrote. “Cole, now an active 11-year-old, is thriving on his mediation, and I fear for what his life would be like without it.”
New treatment breakthroughs could be on the horizon that will improve the lives for hemophilia patients. Some Factor treatments have a longer half life that would increase the time in between treatments for people―perhaps to once a week or once a month.
Great progress is also being made with gene therapy research as firms like Philadelphia-based Spark Therapeutics work toward a permanent one-time reprogramming of a patient’s genetic code that will allow the person’s body to produce the necessary clotting factors on its own.
Kim explained that Children’s Hospital of Philadelphia is very involved with some of the therapeutic initiatives that could one day significantly change the lives of hemophilia patients.
Cole will turn 12 in October. Kim is very hopeful that, at some point in his lifetime, a cure for hemophilia will be available.
“It's an exciting time in the world of hemophilia,” she said.
To contact Staff Writer Steven Hoffman, email firstname.lastname@example.org.