Out of Committee and On to the Floor

HB233 was sent out of committee with a favorable recommendation earlier this afternoon.  The vote was 6 to 3.  The audio of the entire meeting can be listened to online at http://le.utah.gov/asp/interim/Commit.asp?Year=2011&Com=HSTHHS.  The item was first on the agenda and debate lasted a little over an hour.  Thank you to Representatives Ray, Vickers, Chavez-Houck, Cosgrove, Melove, and Watkins who voted for the positive recommendation.

Thank you to everyone who sent emails and attended the meeting!  There was an amazing show of support for our bill. 

The next step is for the bill to be read on the House floor.  We are working to get on the agenda sometime next week.  Look for more information to follow.

In Committee This Friday!

Dear HB 233 - Insurance Coverage for Amino Acid-based Formula Supporters,

As many of you already know, HB 233 was prioritized in Rules and assigned to the House Health and Human Services Committee (HHS) today! Then, this afternoon, thanks to Rep. Moss working magic, the bill was put on the HHS agenda for this Friday February 18th at 2:00pm! We are the second to be heard on the agenda and this is where the committee members will hear testimony about the bill and be able to ask questions. They will then make a recommendation/amend the bill and then possibly release it to the House floor for vote.

IMMEDIATE ACTION:
Please email the members of the House Health and Human Services Committee and ask them to support HB 233 by making a favorable recommendation and moving it to the floor for a vote. Tell how the lack of coverage for this disorder has impacted your family, emotionally and financially (or for physicians, your treatment of patients).  Don't make it too long, but emphasize how the current status harms families.


Email Subject: HB 233 - Please Support with Favorable Recommendation
If any of these members are your representatives, change email subject to "HB 233 - I am your Constituent - Please Support"

Rep. Paul Ray, Chair pray@utah.gov  (supported previous version of bill in 2009)
Rep. Evan J. Vickers, Vice Chair evickers@utah.gov  (didn't vote)
Rep. Rebecca Chavez-Houck rchouck@utah.gov  (supported previous version of bill in 2009)
Rep. David Clark dclark@utah.gov  (voted against previous version of bill in 2009)
Rep. Tim M. Cosgrove tcosgrove@utah.gov  (supported previous version of bill in 2009)
Rep. Bradley M. Daw bdaw@utah.gov  (voted against previous version of bill in 2009)
Rep. Ronda Rudd Menlove rmenlove@utah.gov  (supported previous version of bill in 2009)
Rep. Dean Sanpei dsanpei@utah.gov  (didn't vote)
Rep. Christine F. Watkins cwatkins@utah.gov  (supported previous version of bill in 2009)


If you are unsure who your representatives are, click here to easily find out http://www.le.utah.gov/GIS/findDistrict.jsp.  Constituent emails are much more powerful. Note to all - make sure you sign any email with your full name and mailing address.

Thank you each for your time and efforts - they are vital to the passage of this bill!!! Please let us know if you receive any feedback. You can also forward to family and friends if they would like to help send emails. The more they get the better.

If you would like to attend the committee meeting here are the location details - people are allowed in the room, per capacity, to quietly observe the committee meeting and Tammy will be making purple ribbons for each of us to wear who are there to support HB 233. Let us know if you plan to attend and we will meet outside before the meeting to distribute ribbons.

House Health and Human Services Committee Meeting
Friday February 18, 2011
2:00 p.m.
House Building - Room 25 http://le.utah.gov/maps/map.asp?room=W025&frame=true (click here for map and directions/parking)


Best Regards,

Michelle Fogg (mfogg@utahfoodallergy.org)
Tammy Zundel (eos.utah@gmail.com)

What's In a Number? HB 233

Everything!  Every time you contact a Legislator to discuss our bill - whether by email, phone, letter, or in person - mention the bill number.  Bill numbers are easier for Legislators (and the rest of us!) to remember than lengthy titles. 

Our bill has been numbered.  The number is HB 233 and the official title is "Insurance Coverage for Amino Acid Based Formula".  You want your Representatives to SUPPORT HB 233.

The letters 'HB' represent the fact that the bill will orginiate in the House (House Bill).  This means it will go through House committees, then the full House before moving on to the Senate.  The number is random and reflects that this was the 233rd bill filed in the House this year.  As you can surmise, our Legislators are busy folks who have a lot to consider.  Please help make HB 233 stand out in their minds!

Why Do We Need This Law?

EVERYONE NEEDS TO EAT!! These formulas are a standard of care for the ‘sickest of the sick’. This is what doctors prescribe when there are no other treatment options left. An elemental formula diet has been shown to be 98% effective in treating EGID symptoms when required.

To quote Madeleine’s Law in Georgia “…the poorest of the poor have access to the formulas. The rich can easily afford the expense. In contrast, the working and middle class citizens of this state are struggling to pay for both health care-related expenses and the cost of these medically necessary formulas.”

My Story: Utah

Of the 2.8 million Utah residents, only 2,245 patients have an EGID (0.08%). Of those, only 472 (0.02%) may require formula long term (more than five years).

About 70% of those with an EGID are under the age of 12 years and almost 50% will use formula for less than a year. This is considered short-term for insurance companies but financial ruin for a family with no coverage (especially if more than one child is affected).

More than a third of those on elemental formula are solely on formula…they cannot eat anything by mouth at all. Another third can only have less than 10 foods. No one can receive adequate nutrition off of ten foods. Probably 98% of their nutrition comes from elemental formula.

Who Currently Pays for Elemental Formulas?

Right now, the majority of families who need to purchase this expensive formula do so out of pocket.  The second most common method of payment is state aid.  It is our goal that passage of this bill will help the private insurance companies step up to the plate and provide the services these families so desperately need.

The State of Utah Pays More than Private Insurance

57% No Coverage – these families have private insurance but no coverage and pay out-of-pocket, rely on assistance programs, or go without the prescribed treatment they need

19% State Coverage – these families rely on state programs such as Medicaid, WIC, and CHIP (some are forced to qualify to get the coverage they need)

12% Commercial Insurance Coverage – in some cases the state will help pay insurance premiums because it is cheaper for the state to help pay for private insurance than to pay 100% of the medical bills (i.e. Medicaid Buyout Program)

8% State & Commercial Insurance Coverage – some depend on partial coverage through state programs because their private insurance doesn’t provide the full coverage that they need

4% Commercial Insurance Partial Coverage – some are only provided partial coverage

What would formula coverage mean for everyone else?

One of the biggest questions that comes with changes to health care is 'what will this cost everyone else.'  As in, will my premiums go up even if someone in my family doesn't need the formula?  It is estimated the average family will notice no difference due to the passage of this law.

Of the 40,238 infants and children on WIC in Utah during December 2010, only 308 (0.76%) used elemental formula because so few require it. This provides some re-assurance that premiums will not raise.

Private insurance coverage will save the state money (ie, tax dollars) by moving those who have it off of state aid (Medicaid, WIC, and CHIP).  Since state aid will cover the formulas, some families opt to go underemployed for their abilities just to get coverage.  Given the chance, most of these families would gladly move to private insurance.

Thirteen states now mandate coverage for amino acid based elemental formulas. These states have recognized the importance of a patient’s existence while also recognizing that the cost to the state is virtually nothing.

Example of Fiscal Impact from Recent Similar Legislation

MAINE – legislation covers multiple disorders and diseases, with “additional costs are expected to be minor and can be absorbed within the existing budgeted resources.”

TEXAS – legislation covers multiple disorders and diseases, with “no significant fiscal implications to the State are anticipated.”

MARYLAND – legislation covers multiple disorders and diseases, with “minimal impact to the state. No impact to small business.”

OREGON – legislation covers multiple disorders and diseases, with “No Expenditure Impact on the state or local governments.”

MINNESOTA – came to an agreement, without the need for a mandate, to cover amino acid formula for multiple diseases and disorders.

ARIZONA – no fiscal note prepared (passed in 2006)

Other States With Elemental Formula Coverage

We aren't blazing new territory here.  There are 13 other states that already have some sort of elemental formula coverage.  They are:

Arizona

Connecticut

Illinois

Maine

Maryland

Massachusetts

Minnesota

New Hampshire

New Jersey

New York

Oregon

Rhode Island

Texas

In addition, Utah is in good company with North Carolina and Wisconsin also looking at legislation at this time.

A Citizen's Guide to the Legislature

Joel Cambell, a columnist for the Salt Lake Tribune, put together a handy article titled "A citizen’s guide to monitoring the Utah Legislature."  Its a great introduction to the legislative process for anyone who may be new to lobbying and following bills.  Follow the link above or click here to read the full article.

Legislator Lookup

Our cause is important to us, and we believe its important to you as well.  We need you to help us let our Utah State Legislators know how important it is.  Please take a moment to email or call your Representative or Senator and ask them to support HB 233.  You can easily find your legislator's contact information by using the Utah Legislator Lookup.

What are Eosinophilic Disorders?

The following information was taken from the website for the American Partnership for Eosinophilic Disorders (APFED).  For more detailed information, you can visit their website, apfed.org.

What is EGID?
A growing number of children and adults suffer from a chronic and complex group of disorders described as Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID). These disorders are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places anywhere in the digestive system. EGID is further subdivided into organ-specific diagnosis. For example, Eosinophilic Gastritis means eosinophils infiltrating the stomach. "itis" means inflammation. While visual inflammation is not always present, inflammation may be apparent under the microscope.

Eosinophilic Esophagitis (EE): high numbers of eosinophils occurring in the esophagus.    Eosinophilic Gastritis (EG): high numbers of eosinophils in the stomach.Eosinophilic Gastroenteritis (EGE): affects the stomach and small intestine.
Eosinophilic Colitis (EC): describes the occurrence of high numbers of eosinophils in the large intestine.

EGIDs affect roughly 1:2000 and there is no known cure. Diagnosis is made through endoscopy with biopsies to confirm positive pathology. Treatments vary and can include the following: medication (i.e. steroids, acid reduction), elimination diet (NO food in which allergy testing is positive), food trials, elemental formula diet orally or via feeding tube (proteins are scientifically broken down to amino acids and fats, sugars, vitamins are added).

Symptoms vary widely, depending on the area affected.
Symptoms include:• Nausea or Vomiting
• Diarrhea
• Failure to thrive (poor growth or weight loss)
• Abdominal or chest pain
• Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
• Dysphagia (Difficulty swallowing)
• Food impactions (food gets stuck in the throat)
• Gastroparesis (Delayed emptying of the stomach)
• Anorexia (poor appetite)
• Bloating
• Anemia
• Blood in the stool
• Malnutrition
• Difficulty sleeping

Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others.

What are Eosinophils

The following information was taken from the website for the American Partnership for Eosinophilic Disorders (APFED).  For more detailed information, you can visit their website, apfed.org.

Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cell (WBC). Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Named after “Eos” the Greek goddess of dawn, eosinophils are characterized by their bright red-pink color and double nucleus when stained and viewed under the microscope. Eosinophils are most commonly associated with allergic diseases and parasite infections.

My Story: Caden S.

My son Caden was diagnosed with Eosinophilic Esophagitis and Eosinophilic Colitis in January 2010, just a few months after his 2nd birthday.  We had mixed emotions with the diagnosis.  On one hand, it was a relief to finally know what had been causing my son debilitating pain since he was 4 months old.  On the other hand, an EE/EC diagnosis didn't exactly come with a rosy future.  Its a life changing diagnosis, not just for the individual but for the whole family. 

Caden was diagnosed with multiple food allergies at the age of 6 months, and under the guidance of our allergist we continued to pull problematic foods from his diet until he was eating just 10-15 foods.  Yet his symptoms continued.  More often than not he was in too much pain to play or walk.  He'd spend days at a time crying and shaking in pain.  We met with a pediatric GI who performed a scope and colonoscopy on Caden, ultimately diagnosing him with the EE/EC.

We thought we had been through a lot with the multiple severe food allergies and would be well prepared for the challenges of dealing with an eosinophilic disorder.  We were wrong.  The challenges of raising a child on a limited food diet seemed to pale in comparison to the challenges of raising a child on a no food diet.  Have you ever stopped to think about how often social situations are centered around food?  Outings to church, grandma's house, or even library story time end in tears as my 2 year old begs to have food like everyone else. 

Then there is the financial strain.  We are currently lucky enough to have insurance that helps cover Caden's feeding tube supplies and his specialized formula.  But I worry every day about the prospect of what next year will bring.  All it would take is my husband's company changing insurance providers to put us into financial ruin.  We could never afford the $3,000 per month that is currently being billed.

We have found humor in our new normal as well.  My husband and I chuckle at the most common question we get asked.  When we tell people Caden can't eat food the response is usually, "Not even x?"  Nope, not even food x.  Its also fairly entertaining to watch our uninhibited child lift up his shirt to show off his feeding tube button to strangers.  The look of shock on their faces is priceless.  Few know what to say.

As my son grows each new stage of life will bring with it more challenges.  But we also hope each stage will bring with it new humorous situations.