Province has yet to act on Karley Bovingdon's milk

With Karley Bovingdon's milk supply due to run out in four days, Ontario NDP leader Howard Hampton will hold a press conference in Toronto Thursday to draw attention to the Sault youngster's plight.

As SooToday News reported on Tuesday, the nine-year-old severely disabled Saultite's mother Carrie got the shock of her life on Monday when her pharmacist told her that the $35 to $42 daily cost of the nutrition product she tube-feeds her daughter is no longer fully covered by the province.

Without advance notice of any kind, Carrie Bovingdon learned she'd have to find $930 a month to pay for a product needed by Karley's fragile digestive system to survive.

To read our original article, please click here.

Karley, her mother says, is unable to tolerate any product other than Vivonex Pediatric Powder, a nutritionally-complete formula that can be used both for tube-feeding severely disabled children and for oral feedings in other children.

Drug Benefit Formulary changed over the weekend

Until Sunday, Vivonex Pediatric Powder was listed in Ontario's Drug Benefit Formulary for 100 percent coverage by the province.

However, over the weekend the Ontario Government quietly issued a list of changes to the Formulary for Vivonex and 19 other nutrition products.

The other products for which provincial coverage was significantly reduced effective Monday include:

- Critcare HN Liq-235 mL Pk - Neocate Powder PD-400g Pk - Nestle Peptamen 1,5 Liq-250 mL Pk - Nutramigen Liq-945 mL Pk - Peptamen Lig-250 mL Pk - Peptamen Junior Lig-250 mL Pk - RCF Liq-384 mL Pk - Vital HN Pd-79g Pk

Tony Martin asked to intervene

After she was advised of these developments by her pharmacist, Carrie Bovingdon approached Sault MPP Tony Martin for help on Tuesday morning.

Martin checked with the Ontario Ministry of Health and the Ministry of Community, Family and Children's Services, then called a news conference on Tuesday afternoon to make the issue public.

The news conference was attended by the Sault Star and SooToday.com.

SooToday News also communicated with both the Ministry of Health and the Ministry of Community, Family and Children's Services before posting our story on Tuesday.

An obvious oversight

As our original story indicated, a health ministry spokesman told us that an "obvious oversight" had occurred in Karley Bovingdon's case and ministry staff were contacting the family to resolve the issue.

However, the ministry was unable to say precisely how the issue would be addressed in Bovingdon's case, or what action would be taken on behalf of other families affected by the changes in the Formulary.

Carrie Bovingdon says she received similar assurances from government officials on Tuesday and was initially optimistic she would soon get Karley's milk.

The next day

If the provincial government was about to quickly correct its 'oversight' in denying Karley her milk, it didn't happen on Wednesday.

In fact, Carrie told SooToday News late Wednesday that the tone of her discussions with provincial health officials seemed to shift during the day, and no one was assuring her that Karley would get her milk anytime soon.

Meticulous

Carrie Bovingdon is meticulous about making sure that her pharmacy always has Vivonex Pediatric Powder in stock.

She phones well in advance of her supply trips.

On Monday, she had a six-day supply of Vivonex at home when she dropped into the pharmacy for more.

She's worried, however, that not everyone will be so meticulous.

Parents may be forced to turn children over to the province

If other parents of severely disabled children wait until they run out of Vivonex or other nutritional formulas before going to the pharmacy, Bovingdon says, they could find themselves immediately forced to turn their children over to hospitals or group homes.

She estimates that hundreds of parents of disabled children in the Sault area will soon find themselves in circumstances similar to hers.

Carrie Bovingdon still has options before turning Karley over to the province.

Her husband has a good job in management at the Ontario Ministry of Natural Resources.

Prepared to max out credit cards

Money is tight because Carrie had to quit her job as a full-time piano teacher to become a full-time caregiver to two disabled children.

The Bovingdons have a big mortgage on a house specifically built recently for disabled children.

If necessary, she says she's prepared to max out her credit cards to make sure Karley stays in the family.

Why?

What Carrie can't understand is how anyone could possibly think there are economies to cutting off life-sustaining milk to children like Karley.

She says she literally works around the clock, snatching an hour of sleep here and there, waking at least every two hours to feed, administer drugs, turn or otherwise care for Karley.

There are things that must be done at midnight, at 2 a.m., at 4 a.m. and at 6 a.m.

Then, her regular day starts at 6:30 a.m.

If hundreds of children like Karley are torn from loving families and placed in the care of the province, it will have to pay for the care Carrie now provides for free.

And Karley will still have to be fed with Vivonex Pediatric Powder.

Doctors at Sick Kid's Hospital organizing campaign

At Carrie's instigation, Karley's doctors at Toronto's Sick Kids Hospital are organizing a campaign to return Vivonex and other life-sustaining products to the Formulary.

Tony Martin says that no locale has been established for Howard Hampton's news conference on Thursday, but it will likely take place at Queens Park.

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