$1,000/mth ypoallergenic baby formula rejected for drug coverage

Community Leader
Registered: 10-01-2010
$1,000/mth ypoallergenic baby formula rejected for drug coverage
6
Mon, 10-01-2012 - 12:37pm
Edmonton couple foots $1,000 monthly bill after hypoallergenic baby formula is rejected for drug coverage

 

An Edmonton couple says they may be forced to sell their home to pay for a special formula they must feed their allergy-afflicted infant because the product was rejected for drug coverage.

In the eight weeks since his birth, Isaac Caskenette has been hospitalized twice and undergone abdominal surgery after his parents Lisa and Ira found blood in his stool.

He was diagnosed with necrotizing enterocolitis (NEC) and a cow’s milk protein allergy.

Doctors at the Stollery Children’s Hospital prescribed Neocate, a hypoallergenic, amino-acid based formula designed for babies with cow’s milk allergies who cannot digest milk or soy-based formula.

“The social worker sat down with me and said there is a down side to this: it is very expensive,” Lisa said Sunday.

Neocate, available by special order through select pharmacies, costs about $262 for a case of four 100-gram cans of powder, which is mixed with sterilized water for about 10 days supply.

The Caskenettes estimate it will cost at least $1,000 a month for the formula.

“I wasn’t too concerned because we have Blue Cross and I thought no problem. We have coverage. It will be OK.”

But despite the doctor’s prescription, Alberta Blue Cross rejected Neocate for coverage because it is not classified as a drug under the Caskenettes’ plan.

“Neocate Oral Infant Formula is considered a dietary supplement,” said a letter the Caskenettes received from the company.

“Unfortunately, this product is not a drug, nor is it covered under any category under the supplementary health benefits included in this plan.”

A spokesperson for Alberta Blue Cross could not be reached for comment.

“They’re categorizing it as if it were Ensure or Boost and they don’t see this as a necessity for him,” Lisa said.

She said she can’t breastfeed Isaac for fear of unknowingly passing along to Isaac any dairy proteins contained in a wide variety of foods she might eat, and it’s not known what other allergies he has.

“He can’t go through this much more. The next step is a colostomy bag.”

The Caskenettes say they have made requests to several organizations to help pay for the formula, including Alberta Health, social assistance (the family earns too much money), five charity foundations and the food bank.

All have been unsuccessful.

The family has also applied for assistance from the provincial government’s Family Supports for Children with Disabilities

“It’s in the process, but allergies are not viewed as a disability even though it’s debilitating for him,” Lisa said.

Ira, a labourer for the City of Edmonton, is applying for help from his union’s emergency fund for members, but it’s not certain how much money would be available or for how long.

Friends and family have also pitched in.

“It’s a big hardship,” Ira said. “It’s a thousand dollars out of your pocket every month.”

Lisa said the family may be forced to sell their home. “At the end of the day, there is no cost that’s worth your child’s health.”

Source: http://www.edmontonjournal.com/opinion/blogs/Edmonton+couple+foots+monthly+bill+after+hypoallergenic+baby+formula+rejected+drug+coverage/7323160/story.html

iVillage Member
Registered: 05-20-2008

She said she can’t breastfeed Isaac for fear of unknowingly passing along to Isaac any dairy proteins contained in a wide variety of foods she might eat, and it’s not known what other allergies he has.

First, it is not as difficult to avoid dairy products 100% as she seems to think.  Vegans seem to be able to do it so I don't see it as impossible just that it does require some work but given that situation this mom in I would view it as especially worth the extra effort in her case. She would need to pump and dump in her case due to the seriouseness of the allergy until all dairy protiens leave her system. Now as to other possible allergies her baby might have, the can pump and dump while she illiminates other foods if needed and then try and slowly reintroduce breastmilk. I have heard of mom who's babies had allergy issue as bad or worse who manage to find a diet their baby could tolerate so they could continue breastfeeding so I know it can be done safely. Our own Whichmommy can attest to that.

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Community Leader
Registered: 10-01-2010

It's difficult to judge another's situation. If it were me, would I keep trying to breastfeed? Yes, of course.

But this is what she says about breastfeeding:


As for breastfeeding I too feel it is the best gift a mother can give, however for Isaac having 2 reactions already and the severity of the reactions there is alot more to this then do or don't breastfeed.
1) It is not just milk, it is milk and milk by products, it is soy and whey, whey protien. I also have a nut allergy.
2) I was having supply issues before he went into hospital the first time, both hospital visits required nothing by mouth- the first visit was 7 days the second 10 days. EVEN with medication I was unable to meet his supply demand as I had to pump. pumping is no where near as effective.
3) Isaac would still require this formula as I would have to supplement.
4) IF I do consume any product that contains dairy or a dairy product I unknowingly could pass it along to him and the results could be catastrophic.
5) This is not an intolerance this is a severe allergy confirmed by biopsy.
6) Until his gut is rested enough there is to be no introduction of any new foods (if I changed my diet and supplemented with rice for instance) If he were to continue with issues it would be very difficult to trace it. With this formula we would eleminate this problem.

After consulting a naturalpath, doula and about 17 different opions at the hospital For the safety of Isaac this is the reccomendation.

iVillage Member
Registered: 05-20-2008

That new info does change my view of the situation somewhat though I still stand by comment that breastfeeding may still have been possible in her situation. My previous comment was based solely on the info in the article posted to this board. Even reading the further detils she offers on her situation, while I better understand how she came to the conclusion to not BF anymore, I do think though I would have still chosen to BF had she gone with a very carefully chosen diet. I can understand why she would choose otherwise though.

Now looking over the new details on why she choose to give up breastfeeding I had a few observations I want to put out for anyone who might ever have similar issues in the future. Keep in mind the following is only based on what details this mom has choosen to publicly share and I realize that their may be missing details that would make some of what I say not applicable for her situation.

 <<1) It is not just milk, it is milk and milk by products, it is soy and whey, whey protien. I also have a nut allergy.>>

I realize it would be difficult to avoid all those things but like I said before, it is possible, especially if you make all your own food from scratch.

2) I was having supply issues before he went into hospital the first time, both hospital visits required nothing by mouth- the first visit was 7 days the second 10 days. EVEN with medication I was unable to meet his supply demand as I had to pump. pumping is no where near as effective.
3) Isaac would still require this formula as I would have to supplement.

It is usually possible to at least partially BF and Any BM she can give will cut back on the amount of formula needed and thus the cost.

4) IF I do consume any product that contains dairy or a dairy product I unknowingly could pass it along to him and the results could be catastrophic.

Like I said before, it is possible to make everything from scratch and avoid 100% any possible trace of the foods she lists above. I have seen and heard it being done by others including vegans, others with sever allergies, devout kosher keeping jews, and others who choose or need to keep to a strict diet of some sort. I do realize that it can require a lot of work and she may not have the time or energy to put that much work into making it happen. 

5) This is not an intolerance this is a severe allergy confirmed by biopsy.

I read a story on the LLL website once about a mom from Romania (I think, though it could have been ome other Eastern European country), who's baby had allergies as bad or worse then what this mom is describing. She describes how she severely restricted her diet to be able to BF becuase of how strongly she felt about breastfeeding. Many doctors and other pushed her to just use hypoallergenic formula but she held firm. She eventually mange to find a diet that allowed her baby to tolerate her breastmilk though it was very severelt limited. Despite the hardship this posed to her she felt it was worth it for the benefits of B to her baby. This BF story  inspired me to follow path should I ever have a child with such severe allergies. Now that all being said, I do understand how such a severe course of action might not work for everyone. Maybe this mom has things about her life that make that an unrealtic option but I just wanted to put it oput their that it is possible.


6) Until his gut is rested enough there is to be no introduction of any new foods (if I changed my diet and supplemented with rice for instance) If he were to continue with issues it would be very difficult to trace it. With this formula we would eleminate this problem.

While I do I understand that hypoallergenic formula would solve her baby's problem, I was simply just wanting to point out that it may very well have been still possible to for her to BF on a very carefull restricted and manage diet. Now since I don't all the details about this women's circumdtances I can only comment on what she had shared. Maybe there are missing details that would change my view somewhat and I can completely understand if she woud still choose to use the special formula even if it where theorectically possible to make BF work for her. I just want others to know the severe allergies in baby do not as general rule preclude BF'ing.

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iVillage Member
Registered: 04-13-2008
charleen2008 wrote:

That new info does change my view of the situation somewhat though I still stand by comment that breastfeeding may still have been possible in her situation. My previous comment was based solely on the info in the article posted to this board. Even reading the further detils she offers on her situation, while I better understand how she came to the conclusion to not BF anymore, I do think though I would have still chosen to BF had she gone with a very carefully chosen diet. I can understand why she would choose otherwise though.


While I do I understand that hypoallergenic formula would solve her baby's problem, I was simply just wanting to point out that it may very well have been still possible to for her to BF on a very carefull restricted and manage diet. Now since I don't all the details about this women's circumdtances I can only comment on what she had shared. Maybe there are missing details that would change my view somewhat and I can completely understand if she woud still choose to use the special formula even if it where theorectically possible to make BF work for her. I just want others to know the severe allergies in baby do not as general rule preclude BF'ing.

Well written Charleen as always. I am with you. I would have tended to go with the idea of making all my own food and severely restricting my own diet. She is naturally most concerned about accidentally consuming dairy and provoking an severe allergic reaction. I can understand the concern, but as you point out, if you make all of your own food, this won't happen.

It does seem a more complex issue than the type of reactions many babies get. I know Emily has struggled a lot to be able to find things to eat this time around though.

Teresa

iVillage Member
Registered: 06-10-2008
Catherine and Emily are shining examples that it IS possible to change one's diet for the benefit of one's child. It's obviously too late for these people right now but I feel like with the right support, they might not have had to turn to formula.
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