Out For A Drive – Ken’s Story on Living with Crohn’s and UC

A retired Marine, Ken was now a part -time security guard and had little stamina and felt weak all the time, not knowing what was causing his symptoms. He had no family history of cancer or pancreatic conditions, the only difference between his brothers and him was that he was stationed at Marine Corp Base Camp Lejeune in the 60s. His symptoms were now disrupting his daily life, so Ken and Pat knew it was time to seek medical advice.

His doctors ordered tests and blood work.  It was determined he had both Crohn’s and Ulcerative Colitis (UC) but also his white blood count was off which can be a sign of cancer. He was sent to the Cancer Center and was diagnosed with Chronic lymphocytic leukemia (CLL).  He was on several medications and still having stomach pains but chalked it up to the combination of ailments he was suffering from.

Then in 2018, Ken switched GI doctors due to the office not accepting his insurance anymore. His new GI doctor ran tests again to see what was going on and how they could improve his symptoms. The doctor recommended a full work up with an MRI and colonoscopy. Well, good thing they did because they found inflammation of his small and large intestines and precancerous polyps on his pancreas which required surgery.

After surgery to remove part of his pancreas and spleen, Ken’s GI doctor first recommended an oral medication, but due to complications and poor improvement, his doctor recommended ENTYVIO infusions. They were open to trying something different but when they were told the cost was close to $1200 per treatment (every 8 weeks) at the cancer center they didn’t know what they were going to do.

How were we going to pay for this?  Pat considered going back to work. Friends suggested a GoFundMe fundraiser. This was a very stressful time until they received a call in early 2021 from Sage Infusion, a boutique infusion clinic in Clearwater.  This call changed everything.

“Without a doubt Sage saved his life,” explained Pat. “We are not sure how Sage received our names but were willing to listen if my husband didn’t have to sit in a cancer center to receive infusions and it could be more affordable.”

Sage’s team collected all our insurance and referral information and told us they would look into what the cost of ENTYVIO would be to treat Ken at Sage infusion. They said it would be about 20% of administrative costs. We expected some savings but were both astounded when they were only $12.70 per visit. We thought they missed a zero.

“What’s the catch?” No catch! Sage works on behalf of the patient and directly with insurance companies and the drug manufacturers to get the best cost and only charge patients for administrative costs. There are no hidden fees or duplication of labs that were already done at the referring physicians office.

“I can’t believe they cared, they treat me like family, they handle financial stuff. My wife and I always feel comfortable and know we are in good hands,” said Ken.

In people who have Crohn’s and UC, the immune system mistakenly identifies certain parts of your gut as invasive material and sends too many white blood cells to the area. Your immune system uses white blood cells to protect you from infections and other diseases. This causes increased inflammation in small and large intestines, which can result in permanent damage to your gut. ENTYVIO works by blocking a type of gut-directed, inflammatory white blood cell from entering the gut. Patients receive ENTYVIO by infusion at Weeks 0, 2, and 6. Starting week 14 they receive one infusion every 8 weeks.

“Before we switched gastro doctors each time, he went to the Cancer Center his white blood cells elevated. But once the new doctor put Ken on infusions (ENTYVIO), his white cells count dropped below 10,000.  He is now holding steady, and he is doing so much better.  ENTYVIO is truly helping Ken. No more getting sick in the morning. No more weight loss. I don’t worry about him anymore,” explains Pat.

Ken furthered stated “After the first treatment I felt a difference immediately with less side effects. I even had a cup of coffee the next morning and asked my wife “Let’s go a for a drive!”