A little aHUS Awareness means a lot

As the world slips into September 25th,  another aHUS Awareness Day passes.
From the aHUS alliance‘s view it was the best ever and there is a lot to reflect on.
One example of what the day was about came from an unexpected source.
A nephrologist from Taiwan, Dr  I-Ru Chen, a follower of the alliance, told the story of a 45 year old aHUS patient to the China Times newspaper and they published  on it on aHUS Awareness Day.
The patient is one of probably around 50 aHUS patients in Taiwan
She  was prepared to die rather than leave her family destitute because of the cost of treatment  but was saved by her family, her friends and her society.
On aHUS Awareness Day her voice was heard by her country.
A story that resonates with us all as lmembers of one family responsible for one another” .
Written in Chinese ( with a rough English translation after each paragraph) the article is reproduced below.

奪命彈指間 罕病aHUS千萬藥費納健保


( above : I-Ru Chen MD, from the Chinese Department of Nephrology, said that health insurance has included “terminal complement inhibitors” in some conditions to help patients with atypical hemolytic uremic syndrome. (provided by Dr. I-Ru Chen ))
A 45-year-old woman was hospitalized for fever and joint pain. She was suddenly sent to the intensive care unit for sudden blindness, acute renal failure, respiratory failure, and epilepsy. The final diagnosis was a rare “atypical hemolytic uremic syndrome (aHUS).” The patient heard the high drug cost of 16 million yuan ( just over half a million US dollars)) a year and was unwilling to drag down her  family. She hoped to leave the deposits to her children and choose to give up treatment. Thanks to the efforts of the medical team and the support of the social welfare fund, family and various parties, the condition can be controlled and the family can be reunited.
Dr I-Ru Chen the attending physician of the Department of Nephrology, attached to the Hospital of China Medical University, said that atypical hemolytic uremic syndrome is a rare disease that causes systemic organ failure and can be kill instantly. When the human body encounters infection, even surgery, pregnancy and other stimuli, the body’s “complement system” will activate the inflammatory response, but the complement system regulators of patients with atypical hemolytic uremic syndrome are abnormally activated like a brake failure, leading to the body. The organs are inflamed and the small blood vessels are destroyed. As in the “Avengers”, Thanos “snap”, the red blood cells will disappear instantly, and a large number of blood clots will flow in the body. “Where the blood clots are, it will be necrotic.” Cause various symptoms, such as stroke, myocardial infarction, kidney failure and so on.
Dr I-Ru Chen said that the disease can not be completely cured at present, and can only rely on daily plasma exchange support. If it is not effective, it is necessary to inject “terminal complement inhibitor” as soon as possible to rescue the affected organs. The sooner the use, the more chance to reduce the chance of dialysis in the future. Improve the quality of life. However, the drug cost in one year is as high as 16 million yuan. Most families cannot afford it. If there is no assistance, most of them can only help to face the end of life, and some patients die because they cannot afford it
The patient has suffered from physical shocks and is exhausted. “There is no medicine to pay” is even more desperate. Thanks to the fact that Health Insurance has included “terminal complement inhibitors” in some conditions in June this year, which greatly gives patients with atypical hemolytic uremic syndrome a right to regain their survival, so that patients can once again overcome the disease and return to a warm home. And give back to the community again.

Leave a Reply