Chapter Thirteen
The bane of G.O.D.’s existence was a woman with a well followed blog that focused on her account of terminal illness, and what it’s like to die when you are young and pretty. Hippie Helen, as she referred to herself on her blog, Helen’s Blog, emerged as a reluctant leader in the patients’ rights movement after the scathing diatribe she directed at G.O.D. aired on the national news. Helen wasn’t as old as her nickname would imply, having been born in the mid 1970s. Her nickname was partly due to her liberal beliefs, but mostly based on her e-mail address:
[email protected] A couple of months before Alan’s jump, Helen walked through her front door and violently tossed her purse to the floor. She was shaking from the news she’d just received. Alone now, she broke down. Tears streamed down her face and dripped to the floor. She stomped her feet in a child’s temper tantrum, “It’s not fair!” Her arms flailed wildly as she fought an imaginary opponent. The part of life’s journey in which she wondered how she would die was now behind her.
After months of complaining of a vague malaise that included headaches, problems remembering words, and a fateful morning in which she woke up and couldn’t remember the last few hours, Helen learned she was dying. The only consolation in this knowledge was that the roller coaster of hope and despair, with its manic ups and downs, and hours in the antiseptic cocoon of the hospital, undergoing tests, scans and exams, was over. Her situation offered little hope; a five year survival rate of a few percent, and a mean survival time of twelve months from diagnosis. She probably had a year to live.
Next came the hard part. Sitting at the keyboard, Helen typed her daily blog. When she started her blog it was to keep her friends and family apprised of her life in Chicago. She moved to Chicago about a year ago, from a small town in northern California. Her blog was a fun way to stay in touch and share the crazy people and fast paced life of the big city with those back home. On many posts she featured a random person, a testament to the crazies that lived in her neighborhood. Recent pictures included a grandma with a rainbow Mohawk, and a six and a half foot body builder, in high heels and a Speedo, walking a small, pink poodle. Helen never intended her blog to be read by anyone other than family and friends, nor for it to become, eventually, the primary vehicle through which she voiced her growing concern that something was seriously wrong with her.
August 3, 2006
Helen’s Blog
I’m just going to get to the point. A little while ago I left my doctor’s office where the worst of my fears was confirmed. The doctor’s exact words were, “We found something.”
It’s really, really, hard to believe this is happening and I’m bawling as I type. I was diagnosed with what I feared most. They won’t call it terminal because I’m supposed to live a year, and get this; I could die before that of something else like a taxident in which two cabs collide, hyper-hydration in which I bet a random at the bar I can drink my weight in water, or any other event that isn’t this disease. I’m screwed.
Speaking to you all through this keyboard, I have a weird feeling of guilt, even though I didn’t have a choice in whether I fell ill. Not everyone dies of old age or lifestyle, sometimes it’s just bad luck and you get picked. I suspect my life will now be consumed battling the disease, and fighting for each day while I struggle to stay employed and keep my health benefits.
If it wasn’t for work that provides my health insurance, and the doctors in Chicago I’d return home today. Unfortunately, or maybe fortunately, I’m stuck in Chicago away from all of you as I travel this hard road.
Experts say there is a normal process of acceptance of mortality – denial, anger, bargaining, depression and acceptance. I think I’m going to be pissed off until my last day. This is so unfair. I had plans.
I wanted to let everyone know what’s going on and to thank you for all your prayers and words of encouragement.
I love you all.
Hippie Helen
Helen posted her note to her blog. Her phone began to ring immediately, and she spent the next ten hours talking. The hardest two hours of her life were telling her parents. No parent should have to bury their child.
The doctor she’d seen earlier in the day thought it extremely important she begin a course of treatment, a combination of pills and IV infusion, immediately. The drug cocktail had a proven history of extending life. It wouldn’t cure the illness, but it might buy a few months, and ninety days is a lot of time when you have a year to live. The drugs needed to be maintained within a specific temperature range, and the IV medication required infusion in a doctor’s office with a pump. Because of the cost of the medications and unique handling requirements the doctor did not stock the medication, and the drugs were not available at the local retail pharmacy. She’d have to work with a specialty pharmacy to receive the drugs in the mail, and bring them to the doctor’s office for the treatment.
With prescription in hand, she left the doctor’s office assuming she’d simply call the 1-800 number on the back of her medical insurance card and order the drug. As it turned out, she spent half the day on the phone while her insurance company tried to determine whether the drug would be covered under her medical or pharmacy benefit. Given the cost of the medication neither wanted to pay. It was finally determined that the drug would be covered under her medical benefit, and supplied by her specialty pharmacy provider, G.O.D.
Before G.O.D. would ship the medication, she needed to submit to a battery of additional lab tests and receive prior authorization. She was vaguely familiar with the extreme side effects that were possible with the drug. Her doctor had briefed her and she couldn’t imagine anyone wanting the drug that had any other choice. This wasn’t a drug that was abused for recreational purposes. It was as likely to kill you as the disease itself.
The need for a prior authorization forced her to make a second trip to the doctor’s office late in the day. Back at the office more blood needed to be drawn. As sick and tired of being poked with needles as she was, she complied with her insurance companies requirements. After an hour, her arms black and blue from the phlebotomist’s repeated attempts, she filled a half dozen small glass vials with her blood. Hours later, having sat at the doctor’s waiting for the results to come back from the lab, the nurse called her to the desk and handed her a stack of papers. Helen had them faxed from the doctor’s office to G.O.D. She then called G.O.D. to confirm they had everything they needed to ship. G.O.D. told her to expect the medication in the next day, or so.
A day came and went, and finally two days later there was an urgent knock at her door. The UPS man stood on her stoop with a large box. She signed and brought the medication inside. Labeled on the box was a warning not to open the medication until she was at the site of administration, the doctor’s office. She wondered again why the hell they didn’t ship the medication to the doctor directly. Earlier she’d been told it was cheaper to sell the drug to the patient and only pay the doctor for administration, than it was to allow the doctor to bill for both the medication and its administration. What a freaking hassle. Inside she called the doctor’s office to set up an appointment to begin treatment. It was the first time she’d felt any hope since the diagnosis was confirmed. There were several reported cases of patients living for years after the treatment, but they were the exceptional cases, with life’s serendipity casting them three standard deviations from the mean.
Box in hand, she drove back to the doctor’s office in downtown Chicago. She wasn’t supposed to drive but didn’t have much of a choice given the cost to take a cab. At the doctor’s office the wait wasn’t horrible. She sat in the waiting room, the box on her lap, and a half hour after she arrived she was ushered into a room to put on a flimsy cotton robe. More naked that not, Helen was then directed into the infusion area for treatment and told to sit in a large recliner. Surrounding her was a couple of dozen patients, in like chairs, tethered to small
infusion pumps. The pumps thrummed with the defeatist sound of mechanical respiration as they pushed selective poisons into the patients to whom they were tethered.
A kind nurse hovered over Helen, and helped unseal the box. Upon its opening, which Helen had been explicitly instructed not to do until she was in the presence of a health care professional, Helen learned she had been shipped the wrong medication. Making matters worse the medication was frozen. The nurse shook her head in disgust and told her that the drugs had been over packed in ice, and the proteins were likely denatured and of questionable efficacy. Helen didn’t fully comprehend the science behind the nurses’ comment, but understood that even if G.O.D. had shipped the right drugs they wouldn’t have been usable.
Helen was too disappointed to cry after all she’d been through in the last 48 hours; this was her third trip downtown this week; she’d spent hours on the phone working out whether her pharmacy or medical insurance was responsible for payment; she’d submitted to additional tests to prove she needed the drugs; and, now sat in the middle of dozens of strangers in a flimsy cotton robe with the wrong drugs in her possession. The doctor said it was important she start the therapy in the next couple of days, and it was clear she wasn’t going to make that timeline. Helen wanted a shot at hope, and the medication had given her hope. She went home, took the phone off the hook, and cried herself to sleep.
The next morning she woke and dialed the toll free number to G.O.D.’s customer service. After spending the better part of a day dialing the number, and receiving a busy signal, Helen finally reached the automated attendant. Endlessly pressing 0, she finally reached a customer service representative as the sun began to set. Exasperated, but trying to remain calm, and reminding herself the person to whom she spoke wasn’t solely to blame, she explained she had received the wrong medication and that, in her case, a few days could make a big difference. She reiterated she really needed her drugs. Helen was also clear to the rep that when you’re given a year to live you don’t want to spend your day on the phone trying to reach customer service.
The representative was sympathetic to her plight and asked her if she’d opened the drugs. When the rep learned she had, he informed Helen she would need to pay the full cost of the drugs before they could ship the correct drugs. The drugs she’d opened couldn’t be returned or exchanged. Helen was beside herself. She didn’t know they shipped the wrong drugs until she opened the box, and she certainly didn’t have the money to pay for another shipment. Her illness had quickly drained her savings and her credit cards stood at their limit. The cost of travelling across the country, to visit leading doctors and obtain second opinions, was exorbitant. She was also on the cusp of being released from her job, since she’d begun inadvertently juxtaposing numbers, a sign of the disease’s progression. Helen wanted to understand why the quality control function hadn’t caught the mistake.
“We’ve outsourced that to our customers”, replied the customer service rep cheerily. “Pretty slick, huh?”
At this point, Helen lost control. “You’ve outsourced quality control? How do you outsource quality control in healthcare? You’re accountable to the lives of the patients you serve!” She was incredulous at the idea.
“It’s a pilot program. The CEO wants to cut costs and is interested in what this will save. The idea is that we typically ship the right drugs, and the patients are in the best position to know if we’ve sent them the wrong meds. See, you noticed.”
“Let me get this straight. You’re telling me the frail and infirm are accountable for whether they take the correct medication?” She was becoming hysterical. “They’ve never been to pharmacy or medical school. How would they know if they had the right medicine?”
“I’m guessing they’d have to check on the internet. I’m not sure how they see this working. They are piloting it now trying to work out the bugs. Do you want me to see if I can find a good website for you?”
“What bugs?” she asked, as her voice rose in anger.
“We’re not one hundred percent on our shipments. The spreadsheet we are running the pilot off is a bit of a disaster right now, and it looks like we might be off by one row. When they pulled the patients to assign into the pilot they accidentally shifted everybody’s medication off a row in the spreadsheet. The rows in the spreadsheet don’t quite line up like they are supposed to. So you probably have the medication for the person before or after you on the list.”
“You mean I have someone else’s medication, and they have mine?”
“Likely. Do you want the names of the patients before and after you in the list? It’s probably with one of them and you can call them and work out a swap. We shipped everything at the same time so they’re probably trying to reach us right now. Unfortunately, it’s about a six hour wait to reach a representative.”
“No. Just send me my drugs, and a return label for the wrong order. “
“I’m not allowed to do a return and reship without receiving payment.”
“You’ve always shipped my drugs and billed me later, why is this different?”
“It’s a different policy for re-ships, than for regular ship. The regular ships we have to ship, whether you pay your co-pay or not. The reships we can stick with you with the bill before we mail you your medicine. Plus, you opened the drugs, remember?”
Helen was done talking on the phone. Less than a year to live and she’d wasted the day in anger and frustration. Her back hurt from sitting all day. Her elbow ached from the blood draws. Her ear hurt from the phone. She wanted to be done with the call. From the rep, Helen took the names and numbers of the patients above, and below her, on the spreadsheet. She planned to call them to see if one of them might have her drugs, and she theirs, and if so to work out a swap.
Before she had a chance to hang up, the rep had one quick question, “Do you have any pets?”
“Pets?”
“Yeah, pets. I’m supposed to find out whether you have any pets. Perhaps a gerbil or house cat? Maybe a dog? I guess the pharmaceutical company wants to know.”
Helen slammed the phone down. She then sat at the computer and typed her daily blog, her cross-hairs focused on the customer service, or lack thereof, she received from G.O.D. Helen’s blog went viral when a national news program got wind of her experience and featured her on the evening newscast.
On air, Helen’s poise, stunning looks, and story, captivated the nation. During the interview, Helen had to force herself to keep from recoiling when the anchor, whose behavior she found plastic and self serving, laid a sympathetic hand on her forearm. As the anchor moved to close the segment, Helen spoke the sound bite that rallied the nation, “The wrong drugs arrived frozen and unusable. The drugs I need to stay alive.”
With Helen’s words hanging in the air, the station cut to the bleach blonde co-anchor who cheerily announced, “Up next, lemon zesty meatballs!”
The anchor that had interviewed Helen answered, “Yummy!” and ended Helen’s segment. The news then cut to a commercial for alpine scented laundry detergent.
Forensic accountants would later point to Helen’s TV appearance as the moment G.O.D.s financial problems began in earnest, which coincidentally preceded Doug’s attempt to cash out by a few minutes. The stock hit its nadir.
After her TV appearance, word of mouth and random queries on the Internet grew her following into a groundswell. Firmly entrenched in Helen’s camp were other patients of G.O.D., friends, caregivers, and those who understand that there but for the grace of God go I. She also attracted a following among those that held a morbid, voyeuristic curiosity with death and dying. At one point a lottery existed to guess the date Helen would pass. Helen thought them overly optimistic.
Helen’s original intent of blogging, to let everyone know about life in the big city, had morphed into a vehicle to apprise her loved ones of her illness and a means of managing her grief and helping her think thr
ough the cards she’d been dealt. Never in a million years did she think her blog would come to influence the financial valuation of a company. Financial analysts had come to see her blog as a predictive indicator, and were incorporating her perspective into their projections of G.O.D.’s worth.