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OPEN LETTER to Dr. John Leong Chi-yan and the Hong Kong Hospital Authority re: Access to Elaprase/Idursulfase for the Tang Brothers
I hope this letter finds you well and looking forward to your term as Chairman of the Hong Kong Hospital Authority. As you assume this role, I and many others are hoping that you can correct a serious error.
We are asking that in the early days of your term as Chairman, you reverse a previous decision of the Hong Kong Hospital Authority to deny Wai-Chi Tang and Wai-Man Tang access to Elaprase/idursulfase for the treatment of the rare disease Hunter Syndrome or Mucopolysaccharidosis II. You can view their personal plea on YouTube at the end of this letter.
Brothers and citizens of Hong Kong Wai-Chi Tang and Wai-Man Tang suffer from this ultra rare disease, a lysosomal storage disorder that normally causes progressive physical effects due to cellular waste accumulating in the lysosomes of many of the body’s cells. Specifically, the condition often affects the joints, heart valves, extremities, hearing, and airway, causing a shortened lifespan, pain, loss of energy, and a greater risk for illnesses and complications.
I know the disease well because my son Case was diagnosed with the severe form of the disease at age two, four years ago. Unlike the Tang brothers, my son is cognitively affected as well, but we are incredibly blessed to have access not only to Elaprase/idursulfase, but a clinical trial to treat his cognitive impairment here in the United States. I often write about issues relevant to families affected by Hunter Syndrome at www.SavingCase.com and advocate on their behalf.
I understand that the Hospital Authority denied the Tang brothers access to Elaprase because it believed them to be too old to benefit from the drug. However, there are multiple instances of the drug benefitting those who begin treatment as an adult. Because this is an extremely rare disease and because many suffer from the severe form and do not live into adulthood, there is little statistical data on the effect of the treatment upon adults. However, the data that does exist, in both anecdotal and published form, supports treating these patients.
For example, a gentleman named Dave Moran in the U.S. offers this experience: “I was 45 when I started on Elaprase/idursulfase. A few days after the third infusion I found that my tongue had shrunk to a more normal size. There felt to be more room in my mouth for chewing and swallowing. I wasn’t biting the inside of my cheeks and I rarely get any mouth ulcers now. I began to sleep better. It felt as if my body actually relaxed, whereas before, my body always felt tense even when lying in bed. I’m now able to get straight up from sitting and walk straight away instead of like a 90 year old man.”
Not only those improvements, the treatment can help make the Tang brothers more productive members of the Hong Kong community and access less overall healthcare services. As an example, Mr. Moran also shares, “The biggest improvement I have noticed is stamina. I now have much more stamina than before. This is noticeable in the way that I am now able to complete jobs in one go where before I would have to break them up, possibly over a day or so. While I may not have gained a great deal in range of motion for my joints, what movement I do have seems to be much easier, with less tension and resistance. Generally I would say I am now relatively healthy. I rarely need to visit a doctor other than for check-ups. My liver and spleen have also reduced to normal sizes.”
Another gentleman began treatments at 25 and offers similar results. Simon Ibell, a 35-year old Canadian who began receiving idursulfase as part of a clinical trial ten years ago, states, “I continue to see the benefits of weekly infusions, including improved breathing (pulmonary), increased flexibility, energy level, speech enunciation, and decreased organ size (back to a “normal” size), to name a few. I am blessed to receive enzyme replacement (Elaprase/idursulfase) infusions. This weekly treatment has stopped the progression of my disease and saved my life. None of us know how long we are here, but I know my health has drastically improved as result of Elaprase (idursulfase) infusions.”
There are also several additional medical articles that I would refer you to that discuss the beneficial effects of the treatment for adult patients with Hunter Syndrome:
We respectfully ask that you reconsider this decision and support access to Elaprase (idursulfase) for Wai-Chi Tang and Wai-Man Tang. You can view their personal plea below.
I would be happy to answer any questions you have and look forward to your response.
Sincerely and respectfully,