Paul Chung was granted funding for the $750,000 drug Soliris for three months. His family is worried that will not be enough time for his kidneys to properly heal. Submitted photo

Langley family continues to fight for full Soliris coverage

Paul Chung has been granted $750K drug for three months, but family fears it is not long enough

The provincial government has approved funding of the $750K drug Soliris for another B.C. resident.

Paul Chung of Langley 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 — a decision prompted by a media storm when 23-year-old aHUS patient Shantee Anaquod made a public plea for help.

READ MORE: Langley teen seeks funding for $750,000 drug Soliris

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.

“We 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 — and only if — Paul’s kidney restores its full functionality so he can stop receiving dialysis,” Peter told the Langley Times.

“While we are very happy for Paul to receive Soliris, we … believe that three months are not enough for Paul to restore his kidney function and vanish aHUS. We are not sure where that ‘three months’ restriction came from, either, as there was no further explanation — but we are planning to find out the reasons behind this.”

READ MORE: Government approves funding of $750,000 drug for B.C. woman

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.

“Good news is that this will stop the bleeding, however, since the vessel is blocked, the affected area of kidney will not be functioning anymore,” Peter said.

“This was very crucial for Paul because we wanted to maintain as much of (his) kidney (function) as possible.”

READ MORE: AHUS patient Shantee Anaquod is home for Christmas

Peter said he was told by aHUS Canada that Paul’s kidneys could have a better chance of recovering if he receives Soliris for a longer period of time.

“We are planning to fight against the B.C. government to give Paul more injections of Soliris,” Peter said. “And 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.”

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.

“We just can’t believe that there are these many processes to get a treatment that clearly works for aHUS patients,” he said.

As his recovery continues, Paul’s 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 “Pray for Paul” GoFundMe to help cover their financial losses, and to purchase a dialysis device to use at their home in Langley. This will save them from driving into Vancouver three times per week.

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Paul Chung was diagnosed with aHUS in August, 2017. Submitted photo

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