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

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

Lower Mainland teen seeks funding for $750,000 drug Soliris

Paul Chung is hopeful that, like Shantee Anaquod, he will be approved for costly 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 insurance companies in B.C. that would cover Soliris — 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.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

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

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

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

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

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

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

Just Posted

Elias Pettersson and the Vancouver Canucks drew a large crowd to the Abbotsford Centre in 2019. Canucks management hopes the crowds return for the planned AHL team this fall, and early returns are positive. (John Morrow/Abbotsford News)
Canucks: ‘Incredible’ early interest for Abbotsford AHL tickets

Team has had a strong response to both e-mail information and priority ticket lists

Red dot shows location where fisherman was rescued by boater on Friday, May 7, 2021. Other fisher still missing presumed drowned after boat swamped on Fraser River near Vedder/Sumas confluence. Rescued man swam to shore after boat sank, while friend is still classified as missing as of May 10. (City of Chilliwack map)
Fisherman still missing after boat flipped on the Fraser River

One man made it out, other still missing, after anchor got snagged in the Fraser near Chilliwack

Corina Rochon has been working the front lines of the pandemic in the intensive care unit at Abbotsford Regional Hospital. She is also an instructor in the nursing program at University of the Fraser Valley.
Pandemic the most challenging of Abbotsford nurse’s 16-year career

Corina Rochon works front lines at Abbotsford Regional Hospital

Joan Septembre went for a weekend hike at Lindeman Lake, parking next to a vehicle that had two windows smashed in. (submitted photo)
Thieves active at Lindeman Lake and other parking spots along Chilliwack Lake Road

The hiking community is lamenting an uptick in car theft and vandalism as the weather gets nicer

Dario Lopez comes to the Cascades from Madrid, Spain where he played in very competitive junior leagues. (Dan Kinvig/UFV Athletics)
UFV Cascades sign Spanish basketball talent

High-scoring forward Dario Lopez joins team for 2021-22 season

A bullet hole is seen in the windshield of an RCMP vehicle approximately 4 km from Vancouver International Airport after a one person was killed during a shooting outside the international departures terminal at the airport, in Richmond, B.C., Sunday, May 9, 2021. THE CANADIAN PRESS/Darryl Dyck
Homicide team IDs man in fatal YVR shooting as police grapple with spate of gang violence

Man, 20, charged in separate fatal shooting Burnaby over the weekend

Vancouver Canucks goaltender Thatcher Demko (35) makes a save on Winnipeg Jets’ Nate Thompson (11) during second period NHL action in Winnipeg, Monday, May 10, 2021. THE CANADIAN PRESS/Fred Greenslade
Vancouver Canucks see NHL playoff hopes dashed despite 3-1 win over Winnipeg

Montreal Canadiens earn final North Division post-season spot

The B.C. legislature went from 85 seats to 87 before the 2017 election, causing a reorganization with curved rows and new desks squeezed in at the back. The next electoral boundary review could see another six seats added. (Black Press files)
B.C. election law could add six seats, remove rural protection

North, Kootenays could lose seats as cities gain more

The Independent Investigations Office of B.C. is investigating the shooting of an Indigenous woman in the Ucluelet First Nation community of Hitacu. (Black Press Media file photo)
B.C. First Nation wants ‘massive change’ after its 3rd police shooting in less than a year

Nuu-chah-nulth woman recovering from gunshot wounds in weekend incident near Ucluelet

Nurse Gurinder Rai, left, administers the Moderna COVID-19 vaccine to Maria Yule at a Fraser Health drive-thru vaccination site, in Coquitlam, B.C., on Wednesday, May 5, 2021. The site is open for vaccinations 11 hours per day to those who have pre-booked an appointment. THE CANADIAN PRESS/Darryl Dyck
COVID vaccine bookings to open for adults 40+, or 18+ in hotspots, across B.C.

Only people who have registered will get their alert to book

Dr. Victoria Lee, CEO of Fraser Health, hosts an update on efforts to contain B.C.’s COVID-19 transmission in Surrey and the Fraser Valley and protect hospitals in the Lower Mainland, May 6, 2021. (B.C. government video)
B.C.’s COVID-19 infection rate slowing, 20 more people die

Deaths include two people in their 40s, two in their 50s

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Most Read