One day, Laura received a letter from her health insurance company asking for the weights of her three sons, Billy, Adam, and Josh, who have severe Hemophilia B.
She responded to their requests but when she told her doctor and pharmacist about the requests, they told Laura that it was a somewhat strange request.
Shortly thereafter, the insurance company sent her a letter which said that they will only authorize a lower dosage amount. They claimed that the dosages that the boys were getting weren’t in compliance with the factor package insert (PI) guidelines. When Laura’s pharmacy preauthorized the prescriptions in the dosages that they had been receiving, they were denied. Instead, the insurance company altered the scripts and cut the doses for all three boys by 80 percent.
This couldn’t have come at a worse time since the family’s hematologist was actually talking about raising the dosage for Laura’s youngest son, Josh, who was experiencing nosebleeds. Laura was adamant to get answers from the insurance company why they were unlawfully changing the scripts for her family. She called them continuously, and was sent from one department to another, only to give her the same answer that they had sent in the letter – that the dosages that they had been filling for over a year were now considered by them as “experimental” and therefore not covered. After some time, the insurance company stopped taking Laura’s calls altogether.
Laura had to take off from work to attend to this sudden change within her family and deal with the insurance company. Meanwhile, Josh immediately developed a bleed in his knee, and all three boys began having daily nosebleeds, sometimes lasting hours. One night, Laura woke to find Adam in the shower with his nose bleeding profusely. “There was so much blood in the tub, it looked like there had just been a massacre,” she said. Shortly thereafter, Billy developed a bleed in his elbow. Josh’s knee bleed became worse, and he had to walk on crutches. With the kids having consistent nosebleeds, they felt weak and sick because of the blood loss.
While all this was going on, Laura felt overwhelmed and alone. Living in a rural area, her family was a six-hour drive from their hematologist. They had to visit the ER frequently, and bring their own factor, because the hospital did not carry it. Laura reached out to her local governmental insurance commission, and they carried out several reviews of her family’s situation. However, after each review they sided with the insurance company, and no relief seemed in sight.
Not one to give up so easily, after six months Laura found someone who cared in the insurance commission office. Together, they insisted that the insurance commission involve the family’s hematologist in the review process. This time, after the hematologist shared all the family’s records with the commission, they came out in favor of Laura and her boys. In fact, they actually recommended that all doses be increased.
When Laura reflects on the trying time she experienced not being able to prevent her kids from constant bleeds and the repercussions that come with them, she still feels scared that this could one day happen again. As her sons are receiving their prescribed dosages, all the bleeds have stopped. The insurance company, however, still tries to alter the scripts every now and then. When asked why she doesn’t switch to a different health insurance company, she was quick to reply, “why? so that they could do the same thing to another poor family?” Additionally, she said, “the insurance company would love if we leave, as a family we cost them millions of dollars each year.” Laura wants others in the hemophilia community to take away from her story that they should always stand up for themselves. “Don’t back off!” she says. “Persistence in fighting for your rights will pay off.”
Commentary from Bob Graham, Patient Advocate
Laura’s story is both sad and inspiring. It’s sad that in modern-day America people who are doing what they should to stay healthy are forced to battle with a health care plan over a medically necessary treatment proven to work. Unfortunately these situations are going to occur more often as insurance companies and health care reform opponents put profit over people. The reality is bleeding disorder patients have highly specialized, expensive health care needs. Until America implements a sensible health care policy, the bleeding disorders community needs people willing to fight for quality care. Laura showed us what a determined, informed person can do to make a difference.