This is long, but will impact the most fragile people of our communities. Please bare with me through the entire explanation for this important petition.

In 2014, my husband Paul and I brought a wonderfully, amazing little 3 year old boy into our home.  This little boy happen to be a medically fragile foster child.  We fully adopted Shawn in 2016.  Before coming to us Shawn had a gtube placed at 4 months old and a trach placed at 1 year old.  One of his diagnosis was Failure to Thrive.  This is when a child fails to grow appropriately for their age for any number of reasons.  In 2014 Shawn was 26lb at 3 years 7 months old when we brought him home.  He was on a formula called Compleat pediatric.  He, along with many other children, do not tolerate this formula. It caused him to vomit almost daily and he was chronically constipated.  He was on several other formulas, with the same results, before I had requested this formula believing since it has real food as some of it's ingredients it was a better choice for him.  After much research and countless hours speaking to other parents with the exact same intolerance symptoms their children were experiencing we decided that the best way to give Shawn the nutrients and calories he needs was to put him on a real food blended diet.  We were able to fully transition him to a home blended diet through his gtube in spring of 2016.  At the age of 8 he has grown, gained weight and is healthier than most immunocompromized children fed through a tube are.  Before real food he was hospitalized or on antibiotics every 6-8 weeks, after real food diet he is only sick a few times a year if that and when he is he does not generally have to be hospitalized due to being sick. 

The home blended diet worked well for him until we started to have other medical issues this past November that resulted in testing his GI system for function and reflux.  It came back that he had evidence of severe chronic gastroesophogeal reflux despite being on a medication for this since before we had custody of him.  As a result of this he needed a jtube placed to bipass his stomach and give him feedings into his intestines. Having a Jtube requires a person to be on continuous feeds because the intestines cannot handle moderate to large boluses of food at one time like the stomach can.   At this point I was not confident that I could blend enough calories into the limited volume he was going to need over the 20 hours they wanted him on this feeding schedule.  I was aware of Real Food Blends, a prepackaged enteral (tube) feeding option and other real food prepackaged options. I was also aware that these have been used by other parents to feed their children through the jtube.  After looking up the volume to calorie ratio and knowing Shawn does well with Real Food Blends already, we chose this as his feeding until we can get him back to his regular home blended bolus feeds though a gtube.  After much back and forth with several companies that supply tube feeding, the owner of Real Food Blends and calling his insurance companies we were resigned to the fact we were going to have to pay out of pocket if we opted to use Real Food Blends.  As you may well know medical grade products are NOT cheap.  It costs us $450+, after a small cash pay discount provided by Real Food Blends, to get the appropriate feeding that our son tolerates well, because Medi-Cal (California's Medicaid program) refuses to put it on their formulary, even though it's cost is much lower than most other enteral feeding formulas.  Shawn's secondary insurance will also not cover it because it is not on the Medi-Cal formulary. We are ONLY able to afford this because of the adoptions assistance that is provided to us by the state of California.  If Shawn was not adopted through foster care and he was our biological son, there is no way we would be able to afford this, just as many many parents and other caregivers cannot afford to pay out of pocket for this for their loved one.  It is not fair to other tube fed people to have to suffer though formula intolerance just because they cannot afford to pay for a medical product they should have access to. 

Please continue to bare with me as I continue with more of the reasoning behind this petition.

The state of California has refused to cover Real Food Blends feeding tube meals for Medi-Cal children that require tube feedings.  Unfortunately for these children, the options for nutrition that the state will cover are a range of synthetic formulas with virtually the same ingredients and none with a variety of real food ingredients that the USDA recommends for optimal health.  This leaves the families responsible for the cost of Real Food Blends, families that are often already strapped for money due to ongoing medical expenses and the caregiving involved in having a medically-complex child. Or, the family must feed the child the formulas on the approved list despite poor growth, needing medications to tolerate the formula, and usually round-the-clock feeding with a pump.

Not only do the children and families suffer because of this refusal of coverage, the medical professionals who work with these children – who know and understand the extent of problems that our children have with formula-only diets – are not empowered to give these patients the recommendation to use Real Food Blends. Without the coverage in place, the medical professionals hesitate to prescribe Real Food Blends to not put another financial burden on the family.

This isn't a cost issue - Medi-cal covers specialized formulas at a cost of up to $40 per day for 1000 calories - RFB costs under $15 for the same calories!  Add in the costs associated with medications for intolerance side effects (reflux, motility, etc) or the need for additional surgeries when the child fails formula (Nissan Fundoplications, a surgery that ties a knot in the top of the stomach so the child physically can’t vomit, and J-tubes are not uncommon as a result of 'failing' formulas.)
This isn't a research thing - there has never been a study showing that any one particular formula was better than a varied, whole food diet. The state has added newer formulas the past few years – formulas that are basically the same as the others it offers but has not added any 100% real food formulas.
This Boston study shows that children do better on real food diets - they go to the hospital less, and they are admitted to the hospital less - all things that cost the state less money (and less suffering on child and family!)
This IS a class issue - those children who are lucky enough to have a parent that stays home or can afford a $500 blender or are educated enough to seek out recipes to make food, or can afford RFB out of pocket, benefit. If not, that child is stuck on these synthetic formulas for years! 
The vast majority of other state Medicaid plans cover Real Food Blends.  California, a state that prides itself on encouraging healthy living, does not cover a real-food based option for enteral patients. (The 'old' Compleat this is covered is not really a food-based option - it is not much more than a regular formula with little real food.) 
The failure of the state to provide real food for enteral patients is in direct conflict with many other California programs like the California Fresh Fruit and Vegetable Program - the state has an official program to increase and expand the consumption of fruits and vegetables for children.  California also adheres to the National School Lunch Program which requires five food components, each with daily and weekly minimums, including:1. Fruits 2. Vegetables (including a grades K-12 weekly requirement for vegetable variety with minimum requirements for each of the 5 vegetable subgroups, including: dark green, red/orange, beans/peas (legumes), starchy, and “other” vegetables) 3. Grains 4. Meats/Meat Alternates 5. Fluid Milk **I guess tube-fed children don’t deserve the same basic good nutrition in the eyes of the state? The guidelines for school lunch programs don’t say “oh, just make the kid drink a can of nutritionally complete formula because that’s all they really need.”
If you live in the state of California, your lawmakers are here: https://www.dhcs.ca.gov/services/medi-cal/pages/mmcdofficeoftheombudsman.aspx 

Please contact them to urge The Medical Supplies and Enteral Nutrition Benefits Branch - Pharmacy Benefits Division to give tube-fed children in California the option of real food.

Please sign the petition even if you don’t live in the state – let’s make California take care of some of its most vulnerable citizens (and save money while we’re at it!)