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

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

Lower Mainland family continues to fight for full Soliris coverage

Langley’s Paul Chung has been granted $750K drug for three months, but family fears it is not 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.

Those interested in helping can visit www.gofundme.com/pray-forpaul.



miranda@langleytimes.com

Like us on Facebook and follow us on Twitter

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

 

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

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

Just Posted

Chief Constable Norm Lipinski, Surrey Police Service. (Submitted photo)
Surrey chief constable says ‘comprehensive’ public engagement to be done this year

Norm Lipinski says Surrey Police Service has ‘good momentum’

Dyllan Petrin is charged related to an ongoing investigation in Surrey involving a kidnapping and assault that occurred in July, 2019. (Photo: Surrey RCMP)
Man arrested in connection to kidnapping, murder investigations: Surrey RCMP

Police say Dyllan Petrin was arrested in Vancouver

Crews work to clear the aftermath of a three-vehicle collision that occurred Wednesday morning (Jan. 20, 2021) at the intersection of 16 Avenue and 156 Street. (Tracy Holmes photo)
One person to hospital following three-vehicle collision in South Surrey

Police say it appears one driver went through intersection ‘as if it was not even there’

Surrey-raised forward Jujhar Khaira in action with Edmonton Oilers. (Photo: nhl.com)
Q&A: Surrey’s Jujhar Khaira credits parents for their hard work on his path to NHL

Port Kells-raised player talks about his journey to pro hockey with Edmonton Oilers

New United States Vice President Kamala Harris (left) and President Joe Biden (right) are sworn in at U.S. inauguration ceremonies Wednesday morning in Washington, D.C.. (Saul Loeb/Pool photos via AP)
Surrey Board of Trade highlights innovation, policy changes as new U.S. president sworn in

COVID-19, border re-opening among issues affecting city, SBOT says

Maj.-Gen. Dany Fortin, vice-president of logistics and operations at the Public Health Agency of Canada, speaks at a news conference on the COVID-19 pandemic in Ottawa, on Friday, Jan. 15, 2021. THE CANADIAN PRESS/Justin Tang
B.C. records 500 new COVID-19 cases Wednesday, 14 deaths

Outbreak at Surrey Pretrial jail, two more in health care

A woman writes a message on a memorial mural wall by street artist James “Smokey Devil” Hardy during a memorial to remember victims of illicit drug overdose deaths on International Overdose Awareness Day, in the Downtown Eastside of Vancouver, on Monday, August 31, 2020. THE CANADIAN PRESS/Darryl Dyck
B.C. paramedics respond to record-breaking number of overdose calls in 2020

On the front lines, COVID-19 has not only led to more calls, but increased the complexity

Eighteen-year-old Aidan Webber died in a marine accident in 2019. He was a Canadian Junior BMX champion from Nanaimo. (Submitted)
Inadequate safety training a factor in teen BMX star’s workplace death in 2019

Aidan Webber was crushed by a barge at a fish farm near Port Hardy

Southern resident killer whales in B.C. waters. Research shows the population’s females are more negatively influenced by vessel traffic than males. (Photo supplied by Ocean Wise Conservation Association)
Female orcas less likely to feed in presence of vessel traffic: study

Research the southern resident population raises concerns over reproduction capacity

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

(Black Press Media files)
Transport Canada not budging on enclosed deck rules, despite calls from BC Ferries union

There have been at least 23 cases of the U.K. variant detected in Canada, four of which are in B.C.

The Elk Valley Hospital is adapting to meet the needs of patients in the Elk Valley.
1-in-5 COVID tests coming back positive in and around Fernie, sparking concern

Dr Ron Clark of Elk Valley Hospital said one in five tests was returning positive for COVID-19

Ralliers gather in front of the Cityviews Village apartment building in Maple Ridge to protest attempts to evict low-income tenants by the building owner. (Ronan O’Doherty - The News)
Tenants protest pressure tactics by new landlord at Maple Ridge apartment building

Protest held in front of Cityviews Village on 223 St. Tuesday to rally against low-income evictions

Throughout December, RCMP conducted CounterAttack road checks as police worked to keep roads free of impaired drivers. (BLACK PRESS file photo)
‘You can’t make this stuff up’: Stories from the B.C. CounterAttack campaign

Amusing, yes, but a reminder impaired driving affects ability to drive and to make good decisions

Most Read