None of this is per­sonal, and yet the re­peal de­bate is a ref­er­en­dum on my ex­is­tence

USA TODAY US Edition - - NEWS - Will Cath­cart Will Cath­cart is a free­lance jour­nal­ist and ed­i­tor based in Tbil­isi, Ge­or­gia, cov­er­ing geopol­i­tics in the post-Soviet re­gion.

Iwas di­ag­nosed at age 2 with cys­tic fi­bro­sis, a hered­i­tary dis­ease af­fect­ing more than 30,000 Amer­i­cans. CF causes thick mu­cus to build up in the lungs. The re­sult is a short life marked by chronic in­fec­tions and re­lent­less cough­ing. The dis­ease is ex­tremely rare — a wicked lot­tery ticket. It is a hor­rific way to die, and not an easy way to live.

I’m now 34. Sta­tis­ti­cally, I have seven years left.

For the past four years, how­ever, a new med­i­ca­tion made by the Bos­ton-based com­pany Ver­tex has mirac­u­lously re­versed the course of this dis­ease for hun­dreds (and po­ten­tially thou­sands) of peo­ple, in­clud­ing me, with a cer­tain form of CF. Ka­ly­deco tar­gets the cause rather than the symp­toms of CF, and prom­ises to ex­tend both the length and qual­ity of my life.

I’ve been healthy enough to con­tinue my work as a jour­nal­ist in East­ern Europe, and I’m now prob­a­bly the only per­son you’ve heard of who is look­ing for­ward to mid­dle age. But mir­a­cle drugs don’t come cheap. Ka­ly­deco, without in­sur­ance, would cost $300,000 a year.

That makes it one of the most ex­pen­sive pills ever cre­ated. It seems less ex­or­bi­tant, though, when you con­sider the 14 years of re­search that went into mak­ing this drug — and the need to in­cen­tivize com­pa­nies to keep in­no­vat­ing. We still have a long way to go to find a cure. IN­SUR­ANCE DILEM­MAS Be­cause of break­through drugs like this, I am among the first CF pa­tients to even have a chance. For gen­er­a­tions, CF pa­tients have par­tic­i­pated in clin­i­cal tri­als, risk­ing ev­ery­thing, to make these treat­ments a re­al­ity. Yet it’s likely we will lose ac­cess to this life-sav­ing drug (and many oth­ers) if the Af­ford­able Care Act is re­pealed.

My life now de­pends on the ACA’s most un­pop­u­lar fea­ture, the “in­di­vid­ual man­date.” By re­quir­ing younger, health­ier Amer­i­cans to buy in­sur­ance just like older, sicker ones, the man­date makes it fi­nan­cially fea­si­ble for com­pa­nies to of­fer poli­cies to peo­ple with pre-ex­ist­ing med­i­cal con­di­tions. It also of­fers a mea­sure of fair­ness by pre­vent­ing low-risk in­di­vid­u­als from wait­ing un­til they get sick to buy in­sur­ance. In­stead, the risk is shared by ev­ery­one in the pool.

My dis­ease is ob­vi­ously more ex­pen­sive to treat than most. But you can think of cys­tic fi­bro­sis pa­tients as mu­tant ca­naries in the coal mine. We are plagued by an­tibi­otic-re­sis­tant bac­te­ria. The re­search and in­no­va­tion that go into the drugs keep­ing us alive to­day may help keep you alive to­mor­row.

The only thing harder than fight­ing a drug-re­sis­tant lung in­fec­tion is fight­ing an in­sur­ance com­pany. I’ve ex­pe­ri­enced ev­ery in­sur­ance dilemma you can imag­ine. In the past decade alone, I’ve signed up for six health in­sur­ance com­pa­nies and state pools.

I’ve taken a job at a large cor­po­ra­tion to get in­sur­ance and then waited out its 12-month pe­riod to cover my pre-ex­ist­ing con­di­tion. I’ve ex­pe­ri­enced not only job lock but also what I call “em­ploy­ment hostage” — when get­ting fired is a mat­ter of mor­tal­ity. I’ve also had im­mense help along the way from car­ing in­di­vid­u­als within all of these in­sti­tu­tions. Now, a $300,000-a-year drug is what stands be­tween my lungs and a hospi­tal bed and some se­ri­ous in­tra­venous chem­i­cals.

Like oth­ers on this medicine, I can never go back. The data sug­gest that “if you dis­con­tinue the drug there can be a pre­cip­i­tous wors­en­ing, even worse than be­fore start­ing the drug," says Pa­trick Flume, a CF spe­cial­ist. LONG WAY TO FALL Dur­ing one bat­tle with my in­sur­ance com­pany, I ran out of Ka­ly­deco for 14 days. My health tanked. My lung func­tion plum­meted, as did my hope for the fu- ture. It was a long way to fall.

The Repub­li­can ma­jor­ity in Congress wants to “re­peal and re­place” a health care law that has pro­vided in­sur­ance to more than 20 mil­lion peo­ple. Yet so far, ev­ery sug­gested al­ter­na­tive plan trans­lates to a re­duc­tion in health care. Most fo­cus on re­duc­ing taxes and shift­ing power to the states. Shift­ing costs and ac­count­abil­ity will only lead to a clus­ter of small risk pools and a labyrinth of state laws to nav­i­gate. I know that road well; it’s a night­mare.

As for Pres­i­dent Obama’s legacy, he has the least to lose. I watched his first in­au­gu­ra­tion from a hospi­tal bed in Charleston, S.C.. If the ACA is re­pealed, I will lose ac­cess to the med­i­ca­tion that has kept me out of that hospi­tal these past four years.

A price tag of $300,000 a year on my head has in­spired some ex­is­ten­tial ques­tions: Is my life re­ally worth $300K a year? Without in­sur­ance, if I fall ill, my fam­ily will likely go bank­rupt try­ing to keep me alive. As Congress pre­pares to kill the ACA, I may soon get real an­swers to these ques­tions. I re­al­ize none of this is per­sonal. Fed­eral law­mak­ers don’t wish me harm. And yet I am about to wit­ness a ref­er­en­dum on my own ex­is­tence.


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