A Pitt Meadows mother is angry that the province won’t provide the feeding formula her severely sick daughter needs to live, even though, she said ironically, Medical Assistance in Dying has always been an option.
Sandra Paulsen said her 32-year-old daughter Lauren had surgery to remove teeth and tissue, the result of living with a disease called hypereosinophilic syndrome. The American Academy of Allergy Asthma and Immunology calls it a rare blood disorder where persistently high levels of eosinophils, a type of white blood cell, causes damage to tissue and organs.
During the surgery, Lauren’s jaw was severely fractured and she had to have another surgery to repair the damage, before being sent home on March 3.
The broken jaw rendered Lauren unable to ingest food orally for the foreseeable future, said her mom, plus, she has developed severe food allergies due to the disease she lives with.
Her mother requested she be put in the BC Home Enteral Nutrition, (HEN), Program, which provides liquid formulas and feeding supplies at no cost to patients who require tube feeding at home.
But, since Lauren was discharged she has had no support from the program. Paulsen was told the formula that Lauren needs is not stocked in the province.
“There’s many different brands, but the type Lauren requires is an elemental formula which consists of all the nutritional components required for health, but whole proteins are completely broken down smaller into amino acids that the immune system, in an allergic individual, will not react to,” explained Paulsen.
“Because Lauren’s hypereosinophilic syndrome has resulted in her white blood cells being overactive, to the point she is now allergic to most foods or even the shelf extending treatments put on or in foods, even organic,” she said.
Lauren is cooking and pureeing a mixture of food she gets from local, trusted farmers at home, which she puts it into a gastrostomy tube to ingest. But it may not be enough.
Recent blood work, shows her iron and her B12 getting lower. Lauren is becoming anemic, and is losing weight.
“I’m realizing that no matter how hard I’m trying, it’s not enough,” said mom. “The elemental formula that Lauren needs is nutritionally complete.”
Paulsen, Maple Ridge-Pitt Meadows MLA Lisa Beare’s former financial agent of six years, said she had approached Beare’s office in the past to inform the MLA of Lauren’s needs.
However, she quit her job under Beare in 2023, because she said the MLA wouldn’t help her daughter.
Paulsen, though, would continue to email the local MLA updates regularly. These, too, she said, have largely been ignored.
When contacted, Beare said her office takes constituent concerns seriously.
“Our casework team works diligently to connect constituents who reach out to our office, or drop by, with the appropriate programs, ministry offices, or support. Every person in British Columbia deserves high-quality, accessible health care. I’ve ensured that the Ministry of Health is aware of this case,” said Beare, adding she cannot speak to aspects of individual cases due to patient privacy and confidentiality requirements.
Beare is encouraging patients and their loved ones who feel their questions and concerns are unresolved, to contact the health authority’s Patient Care Quality Office (PCQO), which works in collaboration with clinical and administrative leaders to review concerns, support resolution, and drive quality improvement based on patient experience.
Paulsen said Lauren had been on the elemental formula multiple times from the age of nine to 18 due to her food allergies, before she aged out of BC Children’s Hospital. And, during that time, they never had a problem accessing it.
Since then, mother and daughter had to fight hard to access medicines needed by Lauren to help her condition.
They had to go through private insurance to be able to afford drugs the province would not provide Lauren because of her rare condition. A private donor even stepped up to pay for a one year’s supply of a drug Lauren needed.
Meanwhile MLA Anna Kindy, the Conservative Critic for Health, is calling on the government to take action in this case, calling this a systemic issue in the B.C. healthcare system.
“Lauren Paulsen is being failed by the government,” said Kindy. “Her family is advocating for her, her doctors are advocating for her, but the government is ignoring her. A healthcare system that will not provide life-saving treatment to patients, simply because their condition is rare, is an unacceptable failure.”
Kindy accused the government of failures that have resulted in significant suffering for British Columbians who could have been treated, and unbearable financial burdens on patients’ families as they seek treatment privately.
“This has happened too many times. Every British Columbian with a rare disease deserves access to life-saving treatment,” she added.
The B.C. Ministry of Health said, although they are unable to comment on individual cases because of patient confidentiality, that every person in B.C. deserves high-quality health care that is respectful, safe, effective, appropriate, and accessible.
In general, the Health Ministry said, a patient’s referring physician is responsible for providing the HEN Program with complete and current clinical information regarding the patient’s condition to support the application.
And, the HEN Program staff remain available to assist patients and referring health-care providers with questions about the application process.
Paulsen said her daughter has told her she doesn’t want to die. But, she said, there are very few options available for her.