Rare Disease Day marked at the state Capitol, personal stories front and center

Health

Greta Stifel knows all about rare diseases. That’s because she’s been living with one for quite some time. 

“My connection to the rare disease community is that I am the owner of a rare cancer called neuroendocrine,” Stifel explained to News 8. 

She was misdiagnosed for years as her cancer was advancing. It has since spread throughout her body.

She shared her story Thursday as she championed House Bill 6522, which she created. It would basically bring awareness to different cancers and conditions through continuing education for doctors, giving them the tools they need to diagnose patients, especially those with rare conditions. 

“This bill is an attempt to bridge that very gap that exists right now,” said Stifel. 

All of this was being talked about during Rare Disease Day at the state Capitol. The day is acknowledged around the world as well. Both Republicans and Democrats in Hartford got behind bills that would help patients.

The Banks family from Weston was at the Capitol on Thursday with their own story. 

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“My son was was diagnosed with hemophilia,” said Jennifer Banks. Hemophilia is a rare disorder in which the blood doesn’t clot normally. 

Jennifer is throwing her support behind SB 30. It would prohibit what’s known as co-pay accumulator. Co-pay accumulator basically prevents a patient from having the full cost of their medication go towards their deductible. That’s because they are getting help from the drug manufacturer with the use of a coupon or discount. 

“His dosage right now costs $3,000 and we do it every other day so it’s about over $500,000 a year for his product,” said Banks. 

Countless families are now hoping lawmakers and insurance companies can help ease the burden of an already difficult situation. 

For Stifel, she doesn’t know how long she has left. She wants to see bill HR 6522 passed this time around that others don’t have to go through a similar situation. 

“This has to pass because this will save lives. It will make doctors better doctors. And it will empower the patient to speak up and be their own advocates and that is the most important thing,” said Stifel. 

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