Long Island mothers fight for allergy awareness and EpiPens

“Mom, I can’t anymore; I don’t want to die,” gasped 14-year-old Giovanni Cipriano on Oct. 1, 2013, as he struggled to breathe after ingesting peanuts and having a severe, life-threatening allergic reaction called anaphylaxis.

 “Don’t even say that,” his mother, Georgina Cipriano, replied as she sped into the hospital parking lot. “You’re not going to die. We’re here. Hold on,” Cipriano continued, as she recounted the tragic day during a phone interview. She first fled to an urgent care facility only to be turned away because it closed three minutes earlier.

Georgina Cipriano tried to console her son during the drive to the emergency room as the allergic reaction worsened his breathing. Within seconds, she grabbed his cold hand and turned to see his gray, lifeless body sitting on the front seat.

The doctors administered the EpiPen, an injection containing epinephrine or a hormone that narrows blood vessels and opens airways in the lungs, but Giovanni Cipriao had been without oxygen for 12 minutes and was brain dead. He slipped into a coma for three weeks and died on Oct. 18, 2013.

Giovanni Cipriano. Photo: Georgina Cipriano

After that day, Georgina Cipriano realized the importance of increasing education and awareness around food allergies and EpiPens, such as when to administer the pen, and building a strong doctor-patient relationship.

 “When in doubt, use the EpiPen,” Georgina Cipriano said. “You don’t have bad side effects from the EpiPen. If it was needed and not given, it could be an life-threatening outcome. Why take that chance?”

She promised to help the food allergy community, so they would not undergo the pain her family continues to experience. So she created The Love for Giovanni Foundation in 2014.

According to Food Allergy and Education (FARE), a non-profit organization that focuses on improving the quality of life and health for those with food allergies, 1 in 13 children or two in every classroom have food allergies, and someone is sent to the hospital with an allergic reaction every three minutes.

Georgina Cipriano isn’t the only Long Island mother advocating for the allergy community. Cristina Stainkamp, the founder and president of Protect Allergic Kids (PAK), a non-profit organization started in 2006 with over 500 members, also focuses on raising food allergy awareness by promoting education. She started PAK in honor of her 16-year-old son who was diagnosed with multiple food allergies and is anaphylactic to egg and milk.

Protect Allergic Kids (PAK) at the Food, Allergy, Research and Education (FARE) Walk at Eisenhower Park in East Meadow. Photo: Cristina Stainkamp

“I don’t want something to happen to my son and say, ‘It’s too late,’” Stainkamp said. “Anything I can do to prevent my child or any child out there from dying, even if it’s one life, to me that makes all the difference in the world.”

She travels throughout Suffolk County to speak at schools and libraries on this issue.

“There definitely needs to be more education,” Dr. Atul N. Shah said, a board certified allergist and asthma specialist and the founder of Center of Asthma and Allergy. “People who do not have experience with food allergy do not understand that it can kill someone.”

While both mothers concentrate on raising awareness, they said it’s just as important to educate the public on EpiPen Auto-Injectors and other generic alternatives. Especially, after Mylan’s, a global pharmaceutical company, CEO increased the EpiPen price to $600 in September.

“I was in shock,” Stainkamp said, who carries EpiPens for her son and herself since she is severely allergic to five medications. “People who have children with this already have out-of-pocket expenses between medical bills, the medications, the cost of food is expensive, and now you’re going to throw the one thing that could actually save their life, and you’re going to increase the price 400 percent.”

“When the price goes up significantly, patients cut back on either getting the prescription filled or getting it less frequently than what they need,” Dr. Shah said. “Most EpiPens expire within 18 months or so and many of them have been getting expired EpiPens because they could not afford a new one.”

To provide EpiPen users with affordable alternatives, New York State Senate Health Committee Chairman Kemp Hannon introduced bill S8189 on Sept. 2, 2016, which will permit pharmacists to prescribe cheaper epinephrine auto-injectors.

“At the end of the day, what we’re trying to do is make sure people have good health,” Hannon said.

However, the bill remains in committee until the Legislature reconvenes this month. Cipriano and Stainkamp signed petitions to enact this bill.

In the meantime, new EpiPen alternatives will enter the market. On Jan. 12, the drugstore chain, CVS, announced they will be selling an authorized generic version of Adrenaclick for $109.99 before possible discounts, which is the lowest cash price in the market.  Mylan’s $300 generic EpiPen called Epinephrine Injection, USP Auto-Injector, recently launched in December; the device and drug formula is identical to the EpiPen, but will exclude its brand name.

“We anticipate that 85 percent of EpiPen Auto-Injector prescriptions will shift to the generic product, potentially saving patients and the healthcare system approximately $1 billion,” Julie Knell said, Mylan’s specialty communications director.

Kaléo, a pharmaceutical company, will release AUVI-Q on Feb. 14, 2017. AUVI-Q is the only credit-card size epinephrine auto-injector with a voice system that guides the user step-by-step and has a needle that instantly withdraws after administration.

“Our priority is to return AUVI-Q to the market as an epinephrine auto-injector alternative that all patients can afford,” Mark Herzog said, the vice president of Corporate Affairs at Kaléo. “An allergic emergency moment is filled with uncertainty and panic, but the administration of epinephrine should be safe, easy and reliable each and every time.”

Cipriano said the food allergy community is thrilled for AUVI-Q’s return because it’s cheaper, user-friendly and convenient.

Dr. Shah advises everyone to take food allergies very seriously. He recommends seeing a specialist to receive potential diagnoses, then see an allergist who specializes in food allergy and to carry an epinephrine self-injector at all times.

In the upcoming months, different epinephrine auto-injectors will be competing and making news headlines. While this is happening, these two mothers will continue their mission: educating, advocating and raising awareness in the allergy community.

“I lost my son and I never ever want anyone else to feel the way that we feel,” Cipriano said. “Epinephrine is a food allergy patient’s best friend; it’s going to save your life.”