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

Just Posted

Man wanted by Abbotsford Police for domestic assault

Morgan Knull, 27, has multiple prior convictions

Irish folk supergroup Kíla set to perform on Saturday

Online concert will be available through Harrison Festival Society

Mission woman a part of new Hero Cups

Cheyenne Schulz has been working at Tim Hortons for years while also working as an outreach worker.

Fundraiser golf tournament raises $74,000 for Fraser Valley hospitals

Chilliwack General Hospital will benefit from a tourney at held at the Sandpiper Golf Resort

Canada West Golf Championships cancelled due to COVID-19 travel restrictions

UBC, UBC-O, UFV and UVic athletes will not hit the links this year, Kelowna was set to host

B.C. reports 96 new COVID-19 cases, one hospital outbreak

61 people in hospital as summer ends with election

‘Unprecedented’ coalition demands end to B.C. salmon farms

First Nations, commercial fishermen among group calling for action on Cohen recommendations

Earthquake off coast of Washington recorded at 4.1 magnitude

The quake was recorded at a depth of 10 kilometres

B.C.’s top doctor says she’s received abuse, death threats during COVID-19 response

Henry has become a national figure during her time leading B.C.’s response to the COVID-19 pandemic

BC Liberals must change gears from election cynicism, focus on the issues: UBC professors

COVID-19 response and recovery is likely to dominate platforms

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

B.C. could be without a new leader for multiple weeks after Election Day: officials

More than 20K mail-in voting packages were requested within a day of B.C. election being called

Dozens of Canadian venues to light up red in support of entertainment workers

Local facilities among dozens across Canada to participate in Light Up Live

Vancouver Island sailor stranded in U.S. hospital after suffering massive stroke at sea

Oak Bay man was attempting to circumnavigate the world solo

Most Read