Science Policy Friday: EoE/Eos - Rare Disease, Even Rarer Insurance Coverage



This article, the first in a two part series, seeks to raise awareness of a rare disease affecting children known as eosinophilic esophagitis (EoE or Eos for short), a chronic disease that causes inflammation in the esophagus. Part two examines how a rare disease like Eos Disorders is either not covered or poorly covered by medical insurance, and recent legislation to address this problem for EoE.  A big thank you to our new science and environment intern Chelsea Mann for research and drafting this article.

Inflammation is a term regularly associated with common health complications. It is the most likely reason you experience joint pain after a morning run and the reason you miss work after developing bronchitis. While such complications may temporarily interfere with our daily lives, treatment options for inflammation are usually easily accessible and efficient. But for some people—especially children—inflammation can be a serious condition, particularly when this immune response prevents them from eating regular foods to obtain their basic nutrition.   

Imagine an inflammatory disease that closes your throat, prohibits the consumption of food, and cannot be treated with simple medications. This type of inflammation is caused by eosinophils (white blood cells) in response to allergies. White blood cells are typically helpful, but high quantities of white blood cells in areas other than the blood and intestinal tract can cause major issues. While we often take it for granted, the esophagus is a critical organ. It is the body’s digestive highway and transports food from the mouth and throat to your stomach. The inflammatory response that is triggered by an elevation of white blood cells in people with Eos disorders creates a roadblock on this digestive highway, disrupting crucial function and making it near impossible to safely consume and digest food.

Eosinophilic esophagitis largely affects infants and children. According to most medical descriptions of EoE, the symptoms include nausea, regurgitation, vomiting, abdominal pain and reflux. While rare, eosinophilic esophagitis is one of the most prevalent esophageal diseases and causes of dysphagia or difficulty swallowing, and food being impacted in the esophagus. It is a parent’s worst nightmare to have a child with the potential to choke every time he or she eats, while also being deprived of the basic nutrients he or she needs to live and thrive.  Children’s Hospital of Philadelphia’s webpage on the disease provides more detailed information about the signs and symptoms of eosinophilic esophagitis in infants and children.

Benson, Mukherji, Muoio, Holley, Sumter, Downey, Lampitt, Oliver, Danielsen & Wimberly Bill to Protect NJ Public Safety Officers Now Law

Legislation Assembly Democrats Daniel R. Benson, Raj Mukherji, Elizabeth Muoio, Jamel Holley, Shavonda Sumter, Joann Downey, Pamela Lampitt, Sheila Oliver, Joe Danielsen and Benjie Wimberly sponsored to support workers who are attacked while supervising inmates or detainees is now law.

Under previous law, a corrections officer or juvenile detention officer who was seriously injured after a prison inmate attack and could not work would not receive any salary while waiting for workers' compensation to take effect, which could take several months.

A recent rise in attacks on corrections officers highlighted the need to address this gap in state statute, the sponsors noted.

Assembly Democratic Bill Package Targeting Homelessness in New Jersey Clears Assembly

The full Assembly on Thursday approved an expansive six-bill package sponsored by Assembly Democrats Valerie Vainieri Huttle, Daniel Benson, Elizabeth Maher Muoio, Raj Mukherji, Troy Singleton, Nicholas Chiaravalloti and Patricia Egan Jones designed to reduce homelessness and help New Jersey residents get back on their feet.

"The descent into homelessness can happen rapidly for a number of reasons, but one thing we've learned is that the climb out can be arduous to near-impossible without a helping hand," said Vainieri Huttle (D-Bergen). "We've spent nearly the last six months examining the issue to find ways that we can maximize state resources so that they have a real and transformative impact on the lives of homeless residents in our state. Cumulatively, these bills tackle the most pervasive factors that lead to or perpetuate homelessness."

Andrzejczak, Land, Benson, Holley & Mukherji Measure to Strengthen Animal Cruelty Laws Clears Assembly

Legislation Assembly Democrats Bob Andrzejczak, Bruce Land, Daniel R. Benson, Jamel Holley and Raj Mukherji sponsored to require animal abusers to pay the cost for caring for the animals they harmed gained Assembly approval on Thursday.
The bill (A-772) would provide for the cost of care for animals involved in animal cruelty violations and establish a procedure for the alleged violator to pay for the care. 
"The abusive treatment of animals is plain cowardice," said Andrzejczak (D-Cape May/ Atlantic/Cumberland). "Individuals who commit such acts should and will be held accountable for their actions. It's time to strengthen New Jersey statutes and make perpetrators pay for their unspeakable mistreatment of animals."

Taliaferro, Eustace, Benson & Mazzeo Legislation to Ban 'Flakka' Possession Clears Legislature, Heads to Gov

 Legislation Assembly Democrats Adam Taliaferro, Tim Eustace, Daniel Benson and Vince Mazzeo sponsored to help curb the use of a street drug often associated with violent and self-destructive behavior was approved by the full Senate, 39-0, on Monday. 

The bill (A-2176) would criminalize the possession, distribution, manufacture and sale of the drug alpha-pyrrolidinopentiophenone (alpha-PVP), an inexpensive synthetic drug commonly referred to as "flakka" or "flocka." The measure adds the drug to an existing list of similar prohibited controlled substances that includes the family of synthetic cathinones known as "bath salts."

"Flakka has been linked to a number of psychotic symptoms and violent attacks, threatening the safety of communities across the nation," said Taliaferro (D-Cumberland/Gloucester/Salem). "With this legislation, New Jersey will be proactive about preventing this dangerous drug from taking over in our state." 

Under the bill, possessing, distributing, manufacturing or selling one ounce or more of the drug would be a crime of the second degree. A crime of the second degree is punishable by imprisonment for a term of five to 10 years, a fine of up to $150,000 or both. Possessing, distributing, manufacturing or selling less than one ounce would be a crime of the third degree, punishable by imprisonment for a term of three to five years, a fine of up to $15,000 or both.

Schaer, Lampitt & Benson Bill to Encourage Greater Collaboration between Business and Higher Education Communities Clears Assembly Panel

Legislation sponsored by Assembly Democrats Gary Schaer (D-Bergen/Passaic), Pamela Lampitt (D-Camden/Burlington) and Dan Benson (D-Mercer/Middlesex) to encourage more collaboration between New Jersey's businesses and institutions of higher education to help spur job creation and boost the economy was released Monday by an Assembly panel.

"Fostering collaboration between our higher education institutions and our business community is vital to encourage innovation," said Schaer. "By using existing assets we are learning from what other states have done successfully. We should invest in our future."

"New Jersey is home to top-notch research universities and cutting edge industries. Not having these entities work together is a wasted opportunity," said Lampitt. "This can help produce the type of collaboration that can foster greater innovation and propel our economy forward."

"New Jersey loses many of its college-bound students to other states, denying the state and its workforce of valuable brainpower," said Benson. "If we create better career development opportunities for students through these partnerships, they will be more likely to stay in New Jersey."

Sumter, Jasey, Benson, Muoio, Downey & Mukherji Higher Ed Reform Bill Heads to Governor's Desk

Legislation Assembly Democrats Shavonda Sumter, Mila Jasey, Daniel Benson, Elizabeth Maher Muoio, Joann Downey and Raj Mukherji sponsored to combat student loan debt in New Jersey gained final legislative approval Monday in the Senate.

The bill (A-4239) would revise the New Jersey College Loans to Assist State Students (NJCLASS) program to conduct income verification, limit total student loan amounts and require that applicants first exhaust federal student loans. 

"The only concern a college student should have after graduating is choosing which job will lead them closer to their goals," said Sumter (D-Bergen/Passaic). "It has become the norm for families and students to take on an overwhelming amount of debt to pursue educational goals. This legislation will reassess how we distribute state loans." 

"Furthering your education is necessary to advance a career," Jasey (D-Essex/Morris), chair of the Assembly Higher Education Committee. "It should never be a burden to do so, and it should be encouraged without fear of debt. This is the first step toward helping families struggling to send their children to college without saddling them with cumbersome loan debt."

Assembly Democratic Bill to Promote Equal Pay for Women Heads to Governor’s Desk

Legislation sponsored by Assembly Democrats Joann Downey, Pamela Lampitt, Gary Schaer, Eric Houghtaling, Dan Benson, Troy Singleton, Elizabeth Maher Muoio and Wayne DeAngelo to promote equal pay for women received final legislative approval from the Senate on Monday.

The bill, which was approved by the Assembly last month, now heads to the Governor's desk.

Currently, in the United States, women earn approximately 21 percent less than men. In 2015, female full-time workers made only 80 cents for every dollar earned by men, a gender wage gap of 20 percent. The gap between men's and women's wages remains even when taking into account factors such as career choice, experience and education. One study found that a decade after graduation, women earned 12 percent less than men after accounting for all other factors that could affect pay.

Lampitt, Quijano, Eustace, Kennedy, Benson, Muoio, Zwicker & Mukherji Bill Establishing State Goal to Reduce Food Waste in NJ Gains Final Legislative Approval

The General Assembly on Thursday approved legislation sponsored by Assembly Democrats Pamela Lampitt, Annette Quijano, Tim Eustace, James Kennedy, Dan Benson, Elizabeth Muoio, Andrew Zwicker and Raj Mukherji to establish a statewide food waste reduction goal of 50 percent by 2030.

"Food waste is a major issue nationally and globally," said Lampitt (D-Camden/Burlington). "Unwanted and discarded food squanders water, land, energy, labor and capital resources. When food waste is dumped in a landfill, it rots and creates methane, a very hazardous greenhouse gas. We should begin to look at alternatives to ridding surplus food, especially if it is still unspoiled, instead of just tossing it in a landfill."

"One third of the food produced in the world for human consumption -about 1.3 billion tons - is lost or wasted every year," said Quijano (D-Union). "We must take steps to reduce New Jersey's contribution to food waste and plan for the future."

McKeon, Benson & Kennedy Clean Vehicle Task Force Bill Gets Green Light from Full Assembly

Legislation Assembly Democrats John McKeon, Daniel Benson and James Kennedy sponsored to explore ways to promote the use of "clean" vehicles in New Jersey was approved 50-18-7 by the full Assembly on Thursday.

The bill (A-3295) would establish the Clean Vehicle Task Force, whose 11 members would evaluate issues related to the promotion, development and use of clean vehicles in New Jersey. The body would submit a report with recommendations to the governor and the legislature within a year of organizing.

"Knowing that vehicle emissions are a major contributor to air pollution it's critical that we find ways to get more vehicles with lower emissions on the road," said McKeon (D-Essex/Morris). "This task force will help us find ways to protect the environment and advance our goal of slowing climate change. Now that the President has pulled us out of the Paris Accords, it's all the more crucial that states help lead the way in combating climate change."