The provincial government has approved funding of the $750K drug Soliris for another B.C. resident.
Paul Chung of 91原创 was given his first dose on Dec. 6 to treat Atypical Hemolytic Uremic Syndrome (aHUS), a rare, life-threatening blood disease.
This comes after a Nov. 20 announcement that the province will cover the cost of Soliris on a case-by-case basis 鈥� a decision prompted by a media storm when 23-year-old aHUS patient Shantee Anaquod made a public plea for help.
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But just how long Paul will receive the life-saving drug is still up in the air.
According to his brother, Peter Chung, Paul only has approval to take the drug for three months, and his family is worried that may not be long enough.
鈥淲e were very delighted to hear this news but there was one catch. The government will only provide it for the first three months and will decide to continue if 鈥� and only if 鈥� Paul鈥檚 kidney restores its full functionality so he can stop receiving dialysis,鈥� Peter told the 91原创 Times.
鈥淲hile we are very happy for Paul to receive Soliris, we 鈥� believe that three months are not enough for Paul to restore his kidney function and vanish aHUS. We are not sure where that 鈥榯hree months鈥� restriction came from, either, as there was no further explanation 鈥� but we are planning to find out the reasons behind this.鈥�
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Paul has been in and out of hospital since he was diagnosed with aHUS in August, and recently celebrated his 20th birthday in a hospital room.
Since his first couple doses of Soliris, he has seen some improvement. Paul has been more energetic, his LDH (lactate dehydrogenase) has returned to normal levels and he has been able to stay at home, Peter said.
His kidneys, however, have suffered severe damage from aHUS and he is still undergoing dialysis three times per week in Vancouver. It is unclear if the organs will fully recover, especially after Paul received an embolization to block a bleeding blood vessel.
鈥淕ood news is that this will stop the bleeding, however, since the vessel is blocked, the affected area of kidney will not be functioning anymore,鈥� Peter said.
鈥淭his was very crucial for Paul because we wanted to maintain as much of (his) kidney (function) as possible.鈥�
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Peter said he was told by aHUS Canada that Paul鈥檚 kidneys could have a better chance of recovering if he receives Soliris for a longer period of time.
鈥淲e are planning to fight against the B.C. government to give Paul more injections of Soliris,鈥� Peter said. 鈥淎nd if this does not work out, we need to prepare Paul to apply for a kidney transplant. Usually kidney transplants are denied for aHUS patients because the disease reoccurs in the new kidney after the transplant at a very high rate. However, with Soliris injections, it has been proved that the reoccurrence is much lower. This will require us to submit another application for Soliris so we need to prepare for that as well.鈥�
Peter said the process to get Paul into treatment has been extremely frustrating, especially after learning that patients with Paroxysmal nocturnal hemoglobinuria (PNH), which also is treated with Soliris, do not always have to jump through the same hoops.
鈥淲e just can鈥檛 believe that there are these many processes to get a treatment that clearly works for aHUS patients,鈥� he said.
As his recovery continues, Paul鈥檚 parents have had to reduce their work hours, and Peter had to withdraw from his courses at UBC to help take care of him.
They have set up a 鈥淧ray for Paul鈥� GoFundMe to help cover their financial losses, and to purchase a dialysis device to use at their home in 91原创. This will save them from driving into Vancouver three times per week.
Those interested in helping can visit .
miranda@langleytimes.com
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