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Chemist hands holding test tubes, DNA helix model background


In December, 2017, 27-year-old Jennelle Stephenson was one of a small group of patients at the National Institute of Health (NIH) to receive altered DNA to cure her sickle cell anemia. She received a clear liquid containing her stem cells that have been genetically modified. The process is derived from the completion of the Human Genome Project announced almost 20 years ago, wherein scientists decoded the genes that make up a human being. It is hoped that the achievement enables them to locate and fix the genes responsible for different diseases, which is also known as gene therapy.

Until this clinical trial, Jennelle had lived a life that was often filled with excruciating, “bone-crushing” pain all over her body, due to inflexible sickle-shaped blood cells piling up inside her blood vessels preventing the normal delivery of oxygen throughout her body. Jennelle advises that something as simple as walking up a staircase could trigger a pain crisis.  Her experience highlights the many things we may be taking for granted—our effortless ability to do many of life’s “normal” tasks without giving extra attention to them is quite thought provoking. One can imagine that many who suffer from sickle cell anemia live in fear whilst doing daily activities because they do not know when a crisis will strike or what will trigger it.  Their condition is, therefore, delicate.  Others with sickle cell anemia learn through hard lessons what will trigger a crisis and, unfortunately, live very restricted lives. Jennelle says that many laugh at her because all she wants to be able to do is run and just do basic things.

Throughout her life, Jennelle has also known that her life expectancy is much shorter than a healthy person. She has also experienced the death of friends who died of sickle cell.  Losing friends as a young person is not only sorrowful, but life changing and impactful.

Unfortunately, Jennelle and many like her have faced much prejudice and injustice when seeking medical attention. She has been accused of faking a pain crisis in order to get narcotics, as well as being labelled a “drug-seeker”.  On one occasion at the emergency department, she fell to the floor in pain and a doctor refused to help her. The experience left her very sad, as it was obvious that some people in the medical community just don’t understand her experience: she was in so much pain and the doctor just thought she wanted some morphine.  This mistreatment and ignorance are a clear demonstration as to why patient advocacy is so desperately needed in many health care situations. Numerous patients are not receiving optimal health care and results because they either have no one to advocate for their health -OR- family, friends, and medical professionals do not understand that advocacy for the best interests of their patients or loved ones is part of their role. The benefits of patient advocacy, professionals who you can hire as your patient advocate and much more are outlined in our FREE publication “Achieve Health Victory Through Patient Advocacy!”

Dr. Francis Collins is director of the NIH, the largest biomedical research agency in the world. He was also head of the Human Genome Project.  We share his fascination with genetics as he explains that the painful destruction of sickle cell disease is caused by one single letter in the DNA that is misplaced, a “T” that is supposed to be an “A”. As he further explained, if that error is fixed, the disease is cured.  It sounds simple enough but as outlined below, it is certainly not easy.

The sentiment that Dr. John Tisdale reportedly expressed to Dr. Collins is notable: “I pitched to Francis that it was really time that we do something definitive for sickle cell disease”. Some may contend that ignorance or arrogance are the source of his statement. However, one should consider that curiosity, confidence and perhaps some faith often lead to exploration. Asking “what if…?”  drives us to search. Regardless, the sincere desire and action to cure sick, suffering people is always to be applauded.

Our philosophy is, in part, founded upon the premise that if you accept an illness as incurable, you will neither search for solutions nor implement any solutions that manifest or that are presented. Thus, we appreciate the optimism that Dr. Tisdale expressed.

The process entailed creating a gene with the correct spelling. To insert that gene into the patient, the corrected gene is inserted into HIV, the virus that causes AIDS. HIV is very good at transferring DNA into cells. Then the patient’s bone marrow stem cells are combined with the virus carrying the new DNA. Once the virus comes into contact with one of those cells, it will deposit on it one or more copies of the correctly spelled gene. These cells are then re-inserted into the patient. Ideally, the stem cells with the correct DNA will start producing healthy red blood cells.

This is very risky technology, to say the least! There are no guarantees and unfortunately, there exist some tragic cases resulting from attempts at gene therapy, including some deaths.

Jennelle decided to cut her hair rather than watch it fall it out from the massive doses of chemotherapy that she would require. The chemotherapy is needed to suppress her immune system enough that it would not reject the altered cells. Jennelle’s compassion-generating step to cut her hair seems to be motivated by a desire to have some control of her own in the situation. It may seem small or insignificant to some but is valid all the same.

Sadly, the chemotherapy stripped Jennelle’s throat and stomach of their protective layers. Furthermore, she could not speak for a week and lost 15 pounds. With dangerously reduced immune function, she stayed in the hospital for almost a month.  Again, it is clear that this procedure is not at all an easy “fix” for sickle cell anemia.

Nevertheless, nine months later, there was no sighting of any sickled cells in Jennelle’s blood.  Indeed, her blood looks normal!

Jennelle advises that her body feels strong and she is doing physical activities that would have previously landed her in the hospital.

Jennelle’s father is very grateful for the medical science that has given his daughter her new life. The eight other adults with sickle cell anemia are responding well to the same gene therapy that Jennelle underwent. Dr. Francis foresees that it will take years to improve the treatment to make it more widely available. He also dreams of a day when all 7,000 genetic diseases for which they know the precise DNA misspelling can be eradicated by using the same strategy.

Congratulations, Jennelle! Your courage and willingness to take a chance despite the risks and odds are admirable.


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