Paul Chung, 19, was recently diagnosed with aHUS, and is in need of a $750,000 drug called Soliris. His family is hopeful that he, too, will be approved for coverage by the provincial government. Submitted photo

Langley teen seeks funding for $750,000 drug Soliris

Paul Chung is hopeful he will also be approved for expensive aHUS treatment

Another Langley family is seeking provincial funding for the $750,000 life-saving drug Soliris.

Peter Chung, 24, along with his parents Lawrence and Minok Jun, have been lobbying both the B.C. and federal governments for the last two months to provide coverage for the medication, which is used to treat patients with Atypical Hemolytic Uremic Syndrome (aHUS).

Peter’s younger brother Paul, 19, was diagnosed with the rare, life-threatening blood disorder in August, and has been bed ridden ever since.

But with the Nov. 20 announcement that the province will now cover the costs of Soliris on a case-by-case basis, and another patient — 23-year-old Shantee Anaquod — being approved for funding, Peter is hopeful his brother will soon be out of pain.

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

AHUS causes the body to attack its own healthy cells, leading to blood clotting and organ failure, particularly in the kidneys. It is a genetic disease that can affect people at any age.

Paul, a graduate of Langley Fine Arts School, is a criminology student at Simon Fraser University. In early August, he came down with a sore throat, and as the pain worsened, decided to go in to Langley Memorial Hospital. Blood tests were done and doctors discovered that his condition was much worse than a sore throat. His kidneys were not working properly, and he was transferred to Surrey Memorial Hospital the next day.

Although doctors were still not sure what the cause of the kidney malfunction was, they determined that Paul needed plasma exchange, and two hours after arriving in Surrey he was transferred again to St. Paul’s Hospital in Vancouver.

Five days later he was diagnosed with aHUS.

Today, Paul is lucky enough to be at home, but he continues to undergo dialysis three times per week, and has blood tests daily to determine if he once again needs plasma exchange. He had to drop out of all of his university classes, and now spends his days trying to recover.

He will also likely need a kidney transplant in the future.

“When we were at St. Paul’s, they were saying that they haven’t seen a patient like this in decades,” Peter said. “We don’t know how things are going to go on a daily basis — that’s the problem.

“To see him going through all these treatments, it really stresses him out.”

Much like Anaquod, Paul was initially denied coverage for the drug by both the province and his extended medical.

READ MORE: Langley mom pleads for help in securing $750,000 life-saving drug for daughter

Photo below: Prior to becoming sick, Paul Chung enjoyed playing the saxophone. Submitted photo.

Desperate for help, Peter and his family reached out to the government. They collected more than 2,000 signatures on a petition demanding the drug be publicly funded, and a further 1,750 names on an online change.org petition that was started by family friend Augustine Jeong, a Grade 12 student at Fraser Heights Secondary.

On Nov. 14, they met with Langley East MLA Rich Coleman, who told them that he would bring forward their case after receiving confirmation from a doctor of the medication’s benefits, Peter said.

His family also reached out to Langley MP Mark Warawa, who forwarded their request to the federal Minister of Health, Petitpas Taylor. They are still waiting for her response.

“It might be a long shot, but we thought it was worth it to let them know (federally) that there are people suffering all across Canada from aHUS,” Peter said.

In his research, Peter found three companies in B.C. that would cover Soliris through private insurance — Manulife, Blue Cross and Equitable — but only to a maximum of $250,000 per year.

“This confirms that unless the company I work for is part of these insurance companies, I would never be able to get this coverage through insurance,” he said.

His family also contacted Alexion, the company that manufactures Soliris, and was told they either have to pay on their own, through private insurance or through their government.

“We obviously can’t pay on our own because it’s $750,000 per year, and we can’t be part of the insurance plan because they don’t even offer the amount anyway. So now, our last resourt is to ask our government to do it for us,” Peter said.

“This is an urgent matter because once Paul’s kidney becomes completely dysfunctional, even Soliris won’t help him recover from aHUS.”

So far, they haven’t had much luck.

On Wednesday morning (Nov. 22), Paul requested Soliris coverage and was told by his doctor that he may not be eligible. Another doctor then recommended they check if Paul can receive a kidney transplant first, before applying for the drug.

Peter said this was “very infuriating” as they had been told by a different nurse that Paul’s kidney could potentially recover if he had Soliris, meaning a transplant may not be needed.

“This was rather disappointing given that (the) timeline is restricted for aHUS patients, and Shantee’s case was handled less than 24 hours after (Health Minister Adrian) Dix’s announcement,” Peter said.

Frustrated, they plan to reach out to Anaquod’s doctor instead. They are also reluctant to proceed with a kidney transplant, as that process alone can take three to five years, Peter said.

“We are not sure if Paul will still be even eligible to receive kidney transplant because it does require certain health conditions, (and) aHUS is really unpredictable,” he said.

“We just cannot believe the way they handled this especially when their own patient’s life is at stake.”

The online petition can be found by searching “Make Soliris treatment an option for patients with aHUS and their health care providers” at www.change.org.

 

Minok Jun and Peter Chung collected more than 2,000 names on their petition to make Soliris a publicly funded medication. The B.C government announced on Nov. 20 that they would begin providing coverage on a case-by-case basis. Miranda Gathercole Langley Times

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

Paul Chung’s parents Lawrence and Minok Jun sought help from Langley East MLA Rich Coleman to secure funding for Soliris. Submitted photo

Paul Chung dressed up for his high school graduation. Submitted photo

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