Pa­tient voices key in drug ac­cess de­bate

Baltimore Sun - - COMMENTARY - By Diane Tal­bert Diane Tal­bert is a pso­ri­a­sis pa­tient and ad­vo­cate who lives in Wal­dorf. Her email is pso­ri­a­sis­cham­

In the midst of the on­go­ing de­bate about soar­ing drug prices, there is one voice that is too rarely heard — the pa­tient voice. As the ones de­pend­ing on these drugs each and ev­ery day, pa­tients must be con­sid­ered first and fore­most. Who speaks for us? Cer­tainly it isn’t the in­sur­ers who fight fill­ing our pre­scrip­tions for med­i­ca­tions deemed vi­tal by our doc­tors. Sup­pos­edly it is the job of the in­sur­ance com­pa­nies to fa­cil­i­tate ac­cess to these med­i­ca­tions, but that is not what is hap­pen­ing.

I can at­test to this more than most: I am a pso­ri­a­sis pa­tient and have been sick most of my life. My symp­toms first ap­peared when I was a child, and it has taken me decades to reach some level of con­trol over my con­di­tion. At 5years old, 95 per­cent of my body was cov­ered with rashes and scabs, the cause of which no one could im­me­di­ately di­ag­nose. School ex­cluded me for a pe­riod of time, fear­ing I might be con­ta­gious. Even­tu­ally, my con­di­tion was iden­ti­fied, and it took many painkillers and years for my doc­tor and me to fi­nally find a way to man­age the dis­ease.

Those liv­ing with a chronic dis­ease like I am can un­der­stand the re­lief I felt when I dis­cov­ered the par­tic­u­lar drug that al­lowed me to wake up in the morn­ings, ca­pa­ble of stand­ing and walk­ing. Un­for­tu­nately, my health in­sur­ance com­pany did not feel that this was proof enough to ap­prove my doc­tor’s pre­scrip­tion. Now we must fight with my in­surer ev­ery three months through tele­phone calls, pa­per­work and ap­peals so I can re­ceive my cor­rect dosage of med­i­ca­tion. This is an is­sue that mil­lions across the coun­try are fac­ing, what­ever their par­tic­u­lar ail­ment.

The Na­tional Pso­ri­a­sis Foun­da­tion de­scribes pso­ri­a­sis as an au­toim­mune dis­ease char­ac­ter­ized by a faulty im­mune sys­tem sig­nal that speeds up the growth cy­cle of skin cells. It af­fects as many as 7.5 mil­lion Amer­i­cans and 125 mil­lion peo­ple world­wide. Its im­pact is sig­nif­i­cant, caus­ing em­bar­rass­ment and dis­com­fort, and in some, dif­fi­culty stand­ing or sit­ting for long pe­ri­ods of time or us­ing their hands.

Like many chronic dis­ease pa­tients, I have tried a mul­ti­tude of drugs. Some worked for me for only a short pe­riod of time, and others had no im­pact. When I ul­ti­mately found re­lief, my in­surer de­nied that pre­scrip­tion and put me on an­other drug — one that did noth­ing for my pain. My in­surer in­sisted on this med­i­ca­tion be­cause it was a cheaper al­ter­na­tive. Pri­or­i­tiz­ing price over a pa­tient’s well­be­ing is un­con­scionable.

I do not have a unique case when it comes to ac­cess­ing med­i­ca­tion, sadly; this type of de­nial is ram­pant across the coun­try. Pa­tients are up against a wall with their in­sur­ers, who are plac­ing an alarm­ing num­ber of bar­ri­ers around drug ac­cess and of­ten forc­ing pa­tients to take some­thing that will have no im­pact on their health or qual­ity of life.

It may seem un­be­liev­able that the med­i­cal team, which knows a pa­tient’s his­tory bet­ter than any­one, is not able to pre­scribe the drug that has shown to have the only pos­i­tive im­pact on a pa­tient’s ill­ness. In­stead, in­sur­ance com­pa­nies, which do not have any knowl­edge of a pa­tient’s per­sonal sit­u­a­tion, are mak­ing the fi­nal health de­ci­sions for mil­lions across the coun­try.

For now, I have ac­cess to my pre­scribed med­i­ca­tion at the cor­rect dosage. But I will never be fully at ease while I wait ev­ery three months for the next pos­si­ble re­jec­tion.

In­sur­ers are fail­ing pa­tients by deny­ing us ac­cess to medicines when there is no med­i­cal rea­son. They are risk­ing our health when our ill­nesses can be bet­ter man­aged un­der our doc­tors’ guid­ance. I im­plore in­sur­ers to lis­ten to pa­tients — and if they refuse to do so, I ask our law­mak­ers to fight for their con­stituents and all Amer­i­cans who need ac­cess to these life­sav­ing treat­ments.

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