As a nutrition expert, it should be up to me, the family and the healthcare team to decide on how best to treat these children and if nutrition is the ideal treatment, then it should be included as part of the child's covered treatments. It is frustrating to have to delay or change care if nutrition therapy is not covered. This can worsen illness and also cause undue stress and harm to the child and their family.
As a Registered Dietitian who works in a pediatric outpatient gastroenterology and nutrition office, I routinely work with children ...
I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often see patients whose digestive conditions mandate that they be on special diets or supplements and yet these diets cannot be afforded. A.B. is a 9-year-old boy who was born with a condition called ‘jejunal atresia.’ […]
I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often ...
As a provider, I know what is best for these patients and when covered, the results (i.e. improved absorption, reduced eosinophils, improved growth and weight gain) are nothing short of incredible.
I am a Registered Dietitian for GI disorders. I spend probably 10-20% of every week working on ordering medical foods for patients ...
Having medical food coverage would expand our daughter's ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.
Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...
My husband has been trapped at that job his entire career because of the formula coverage for our son, that we can't afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula.
Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and ...
As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the treatment of choice for these conditions. Insurance denial is particularly frustrating in the case of a motivated child who intends to consume the prescribed nutrition by mouth but is told that he/she would require a feeding tube to have this therapy covered by insurance.
As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the ...
I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage
Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...
At 1.5 years old she weighed 14 pounds and had g-tube surgery. She's 3 now and has never eaten food.
Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...
When I think of our little guy and how important it is for him to follow a structured diet, I don’t want financial limitations to be the reason of failure.
Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...
Medical Foods Coverage would greatly reduce our out of pocket cost especially at daycare, having to provide her formula for the next year will be hundreds to thousands of dollars.
Medical Foods Coverage would greatly reduce our out of pocket cost especially at daycare, having to provide her formula for the next ...
We have spend hundreds of hours on the phone, writing letters and working with her doctors for our insurance to provide the medical nutrition needed for Ellis to stay at her healthiest.
We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...
My employer, though great for everything else, is self-Insured. Due to this fact they are not required to cover my 13 year old’s formula.
Coverage would mean that i could really offer my son enough nutrition per day instead of rationing. He does eat about 6 foods, but ...
Told we were “too rich” to qualify for medical foods coverage but if we liquidated all our assets we could qualify for limited help.
Diagnosed at 14 months. Husband was unemployed at the time, I was working. Went through every agency in Ohio for assistance on cost. ...
When patients' mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but ...
Our clinic's desire to bring the best possible care and outcomes to our patients is directly related to their ability to get necessary medical foods. Many who are not able to get medical foods are not able to follow their restricted diets, leading to poor outcomes and disease associated morbidities.
Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...
A young couple with a child with PKU in my care made the difficult decision to move to another state and region where they would be able to depend on full medical food and formula coverage and to afford the cost of just one child with PKU.
Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...
My biggest frustration with the lack of coverage of medical foods is that these are NOT foods like those that we purchase from our grocer, they ARE medical treatments just like medications. The party with the condition CANNOT be healthy without them in the exact same manner that a person with diabetes type 1 cannot live without insulin.
As a clinical dietitian in a clinic setting more than 75% of my time was spent managing covering for medical foods. These tasks ...
The biggest frustration as a provider is knowing that many patients are not receiving the care they need to manage their conditions. The second biggest frustration is that even when an insurance “covers” medical foods, it may still not be obtainable since many ‘in-network’ distributors will not supply the needed products.
Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...
Turning 26 and navigating through my own insurance was a nightmare.
Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...
When our daughter was born, our two employer-provided insurances refused to cover her condition.
When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...
I stopped taking the formula because it's $2000/month out of pocket and I couldn't afford that. Later that year I visited my clinic, where I found that my vitamin levels were critically low because I didn't have access to the formula. I essentially went the whole year without any kind of formula or protein supplement.
In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...
The formula is very expensive!...My Grand-daughter and her husband both work and with all the bills cannot afford the formula (which is relevant in this disease)
The formula is very expensive!…My Grand-daughter and her husband both work and with all the bills cannot afford the formula ...
So far Mark's medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.
So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never ...
My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself.
The cost of food and formula limits many things besides medical foods themselves.
Because of the high cost of formula and food, ...