Today is January 13th, 2017 and 11 years ago today, Frank and I started the day as merely friends but ended the day as much more. It was the day when this man with a little more than 6 months of sobriety boldly proclaimed, “I think you’re my wife” and I knew from the depths of my being to respond, “I think you are right.” (This is the part where I should acknowledge that I also said, “but I need a week” and Frank told me to “take all the time you need! I just had to tell you!”) Yet we still recognize January 13th as a precious anniversary.
Only a few weeks after our official relationship was conceived, Frank had to share a hard truth with me. There are many ways that his life bears the marks of the chaotic and broken life that he lived throughout his 20’s. His sober date, 6 months prior to that fateful January night, was also the day after he got out of jail for the last time. Even with some stretches of sobriety, most of his 20’s were spent on the street, in & out of drug rehabs and in & out of jail. Beside a scar on his back from a knife attack, another bodily impact of his years of drug addiction was the Hepatitis C that lived in his blood and threatened his liver. Since it’s transmitted almost exclusively from blood to blood interactions, he almost certainly got it from an infected needle. This narrow route of transmission also meant that it wasn’t a significant risk to me or others. But it was a great risk to Frank’s liver. Many people die far too young from liver cancers and liver failure on account of Hepatitis C. Over the years, and up to today, Frank’s journey with Hep C has been a series of good and bad news.
A few weeks after Frank first told me about his Hepatitis C, the good news was that the viral load of Hep C in his blood was low enough that treatment wouldn’t even be recommended.
The bad news was, he didn’t have any health insurance to monitor it in the future.
The good news is, he was able to get an appointment at a nearby free clinic to monitor the Hep C.
The bad news was, in September of 2007 his viral load was high enough that liver damage was inevitable without treatment to eradicate the Hep C.
The good news was, there is a treatment for Hep C.
The bad news is that we still did not have heath insurance, and even if we did, it would be a considered a preexisting condition.
The good news was, Pennsylvania had a waiting list for a health insurance for adults who made too much money for medicaid, but not enough to afford health insurance and we were able to get on that waiting list.
The bad news is that the waiting list was expected to be 12-24 months, and you could only be on it if you were uninsured, so I couldn’t even keep my medical crisis policy.
The good news was, we passed that 24 months without any major medical emergencies even though we were uninsured.
The bad news was, another 12 months went by and 3 full years on the list still didn’t give us the chance for affordable health insurance. In fact, the program had quietly dissolved because of lack of funding and support.
The good news was that over the next several years as our family grew, we found ourselves in circumstances where we had seasons of being covered by medicaid. We had health care for all of our babies’ births and Frank was able to start seeing a GI doctor at Jefferson University.
The bad news was, we were always in the position of losing that heath care coverage as our income fluctuated. At one point making a mere $200 more in the year would have put us in the position of needing to make nearly $10,000 more to cover our family’s basic medical insurance needs.
The good news was, we kept hearing news about new Hepatitis C drugs that were being developed. A nurse researcher at Jefferson was always keeping Frank in mind as different Hep C treatment studies were going on.
The bad news was, the drugs that were on the market at that time were tantamount to chemotherapy - weekly injections over full year that would often put you in bed feeling like you had the flu for the rest of the day. Along with that, the daily oral meds were highly teratogenic, meaning that they could cause severe birth defects not just to a the baby of a woman on the treatment but to the baby of a woman who was the sexual partner of a man having the treatment. A requirement of all of the drug trial studies were that your agreed to use two forms of birth control. You could not have the treatment if your partner was pregnant, and your partner could not get pregnant until a full 18 months after the 52 week treatment period. It was scary to consider the harm to Frank’s body, and preparing for the option of treatment derailed the vision we had for a fourth Varaso baby. Oh and for all this trouble, this treatment regimen was known to have about 50% cure rate.
The good news was, enough time passed for all of those drug trials to be completed and a new medication called Harvoni was on the market. It was a once-daily oral medication taken for 3 months with a 95% cure rate.
The bad news was, it cost $1000 per pill. For the three-month regimen that was a nearly $100,000 cost.
The good news was that it was the year 2015 and the Affordable Care Act had been created and enacted to help people exactly in our position.
The bad news was that we initially fell into that no-man’s-land where we couldn't get a Marketplace policy OR medicaid. And then for some reason I was able to purchase a Marketplace policy, but Frank was bumped back to a Medicaid policy, insurance which did not cover the cost of Harvoni unless you were in stage 3 liver damage.
The good news was, Frank was only had stage 1 liver damage.
The bad news was, those people who were eligible for insurance to pay for treatment with Harvoni were those whose livers were so badly damaged that they would still be at elevated risk for liver cancer for the rest of their lives. If we waited around for Frank to get to severe liver failure, he could then get treatment, but then he would still be at great risk for the same kinds of things that kill people with untreated Hep C.
The good news was Frank was still getting regular visits with his GI doctor and she recommended waiting with hope on the endeavors that Pennsylvania legislators were making to try to make Harvoni available for people with earlier stages of damage.
The bad news was, it seemed like every visit to the GI doctor was a waste - just finding out that nothing was new and that we should keep waiting.
The good news was that when we reapplied for heath insurance in 2016, Frank and I were both able to purchase insurance through the Marketplace.
The bad news was that we had a pretty high co-pay, and I doubted that it would be worth it for Frank to pay $100 to keep his appointment with the GI doctor just to hear that “keep waiting” message.
The good news was that he went anyway, and at that appointment discovered that our insurance from the Marketplace covered the Harvoni treatment even with only stage 1 liver damage.
The bad news is that after insurance covered a huge chunk of the nearly $100,000 treatment, there was still a nearly $15,000 copay.
The good news was that the drug company offered a patient assistance program to help cover the copay, and we would only end up paying $15 out of pocket.
The good news is that last April 7th, Frank took his first Harvoni and within a week his blood work already showed an undetectable level of Hepatis C in his blood.
The good news is that he took his last Harvoni on June 30th and that every set of blood testing along the way has shown no Hepatitis C in his blood.
The good news is that if you still show no Hepatitis C in your blood 6 months after treatment is completed, you are considered cured.
The good news is that Frank gave up that blood to LabCorp on January 3rd.
The good news is that we just got the results that confirm that Frank is officially cured of Hepatitis C.
This is a story of good news for us and for our family. Since Frank called me from the GI doctor’s office back in February of last year, it has felt like a bit of a “pinch me, I’m dreaming because this is way too good to be true.” In fact, we have waited to share this news more widely unit after the 6 month period passed and we could fully embrace and enjoy the truth that Frank has been cured from Hepatitis C.
Even as I write this, I have to do so with such a mix of feelings. We are obviously ecstatic that things lined up perfectly for Frank to receive this treatment in a window of time when we had the exact kind of insurance that was needed to provide this treatment for him. We credit God with his sweet providential care of us, and acknowledge that his goodness was expressed to us through the brilliant researchers who created Harvoni as well as the people in positions of power who made it a priority to make sure people like us could get affordable health care.
I was hesitant and cautious to share this story at this point in time because of all that has been going on politically in our nation recently. I do my best to voicing my opinion on anything that even sniffs of politics apart from careful conversations in-the-flesh. I don’t want to risk alienating people who hold different views than I do, and quite frankly I am afraid of the criticism that might come my way if I were more transparent. However, there is just no way to factually tell this story without clearly articulating how essential the Affordable Care Act has been for our family’s well-being. At the risk of the negative emotions or consequences of discovering that someone reading this doesn’t share my views, I will still proceed with words that seem timely.
In the same day that we celebrate this cure, we are taking in the news that acts of Congress this week put us at great risk for being right back at the same place of being uninsured in the future. That is scary for us. And it’s heartbreaking for us to wonder who else may not have the same happy ending that we are enjoying today because they will need this treatment next year instead of last year. It’s humbling to have to admit that we have needed this kind of help, but I will not let my embarrassment or fear of judgement keep me from asking you to think hard and act well on behalf of people like us.
But for today, we welcome you to celebrate with us as we continue to cherish and feel so grateful for all of the joy that January 13th represents in our life!
I’m sure you have enjoyed many greetings & well-wishes both in person and through the mail over the past several weeks, and like us, you might even have an entire beautiful collection of Christmas cards displayed in your home from friends far & near. With Christmas behind us, the greetings have turned to a default, “Happy New Year!” which seems to be as good a way as any to start a conversation with folks who we are seeing for the first time in 2017 as we settle back into a regular routine after days off from work & school.
Well, we do indeed hope that you have a healthy, happy and wonderfully blessed 2017, but we timed the arrival of this season's newsletter intentionally to be able to extend another specific blessing to our friends and family — “Happy Epiphany!” “Epipha-what?” you might be asking. I confess that growing up I was only familiar with the word epiphany in the generic sense, as in “a moment of sudden revelation or insight.” I think the first time I heard of it as an actual date on the calendar was when we enjoyed an Epiphany Bonfire with our friends in Vermont one very snowy January 6th— everyone brought their dying Christmas trees with whatever needles remained to throw into a community bonfire to light up the night and keep sled-riders and hot chocolate drinkers plenty warm. That is likely when I started to become more curious about what Epiphany was, and wondered what I might be missing out on.
Here is what I learned - For those who aren’t familiar with Epiphany specifically, you have probably at least heard the song “The 12 Days of Christmas.” Ever wonder why there were 12 days? Well, there are 12 days between Christmas Day and January 6th, and although your nativity set likely insists upon including the wise men in the scene of Christ’s birth, factually we know them to have visited Jesus at a separate time and place when he was described as a “child” not a newborn baby. So while his birth is celebrated at Christmas, and even for 12 days following, Epiphany recognizes the visit of the magi bearing their gifts of gold, frankincense and myrrh.
Let me tell you some of the reasons that I have come to love Epiphany, and maybe you will come to appreciate it and decide to embrace some of these celebration ideas for you own household. First, the winter season that follows Christmas can often be a difficult time. The days are shorter, you or someone you know is quite possibly fighting a nasty cold or the flu, and while there was the brightness of holiday decor for many weeks, the dullness left behind when those decorations are taken down often accentuates the internal bleakness that can accompany winter’s external barrenness. Plain ol’ winter can feel like a painful letdown after the Christmas season. Recognizing Epiphany has given us a way to extend our holiday celebration and preserve our thankful hearts for the sweet gift of Immanuel. When we pack away our Christmas decorations, we often keep up some of the lights and add to them paper star garlands. If we failed at making those plates of Christmas cookies for friends, we might make & decorate some star-shaped cookies as an Epiphany gift. From year to year we might spread ourselves between home and out-of-town family for Christmas celebrations, but we are always back home and settled in by Epiphany. This creates a default bonus opportunity to invite friends or neighbors over for a celebratory meal, topped off with a dessert that hides a baby Jesus figurine inside for one lucky person to find.
This idea is one that is harder to do, but one that I cherish — my very favorite Christmas seasons have been the years when we have opted to wait to give our kids their gifts until Epiphany. It has always been the tradition in our family that each child gets 3 gifts — why should they get any more than Jesus got when the point of the holiday is to celebrate HIS birthday? As parents trying to raise kids in a materialistic and disposable culture, it is a challenge to make Christmas about Jesus, but holding off gifts until Epiphany has helped with that. It has shifted the focus of the Christmas season to spending time together as a family and toward and recognizing the incomparable gift of God-in-flesh. (And practically, you can purchase much nicer things for much less money AFTER Christmas!)
One of our family’s very favorite holiday traditions is visiting a Living Nativity hosted by a church nearby. This year was our 8th year going! In years past, the kids will start asking as early as July, “When are we going to the living nativity?” It’s a really beautiful production that doesn’t just include a single scene of Christ’s birth, but that tells God’s story of love and redemption from before creation, and depicts the life of Jesus all the way through his ascension into heaven. The kids have always liked the “Boys in the boat” scene — the story of Jesus calming the stormy sea after he has been sleeping in the boat.
There is a different scene which is my hands-down favorite, and this is where we get back to Epiphany. True to scripture’s telling of the story, the magi don’t show up at the manger to see a newborn baby Jesus along with the shepherds, but instead, as they approach the house that the star led them to, out the door bounds a toddler Jesus ready to receive their gifts and their worship.
Even in the midst of our family’s favorite December tradition, I am already turning my mind and heart toward Epiphany — the reality of “toddler Jesus” utterly thrills my heart. I mean truly, how absurd, right? It is one thing to imagine a serene sleeping newborn lying in a manger and to say “That is my God, with flesh just like mine.” But a toddler? Hang out with a toddler for even an hour, and then tell yourself, “Immanuel, God with us, God-with-flesh-on means that the Almighty put himself into a toddler’s body.” A toddler — with all of the silliness, inappropriate sharing of observations, freedom with their bodily functions and total disregard for the concept of an adult’s personal space. The incarnation, God coming near to humankind, to me, to you … it is really too wonderful to bear the thought of when it’s fully pondered. And I love how toddler Jesus, how Epiphany, pushes me to consider the beautiful absurdity of God’s grace and redemption even more.