Phar­macy ben­e­fit man­agers trump doc­tors, insurance

The Fresno Bee (Sunday) - - Front Page - BY CAR­MEN GE­ORGE cge­[email protected]­

Norma Smith was di­ag­nosed with stage-three can­cer in De­cem­ber.

There are four stages to can­cer, and num­ber three means the can­cer – in Smith’s case, a blood can­cer, mul­ti­ple myeloma – had spread ex­ten­sively.

As it at­tacked cells in Smith’s bone mar­row, an im­por­tant part of the im­mune sys­tem, the 62year-old was ea­ger to start treatments to stop it. What hap­pened in­stead in the months that fol­lowed was Smith’s phar­macy deny­ing and de­lay­ing chemo­ther­apy treatments pre­scribed by Smith’s med­i­cal doc­tor over and over again.

Smith, a re­tired spe­cial ed­u­ca­tion teacher in Fresno, and her hus­band, Rodney, a re­tired school psychologi­st and di­rec­tor of spe­cial ed­u­ca­tion, con­sider their “very ex­pen­sive” health insurance cov­er­age to be “the best.”

But that insurance didn’t en­sure Smith would get the drugs she needed when fac­ing CVS Spe­cialty Phar­macy – the phar­macy their insurance re­quired them to use. Can­cer drugs pre­scribed by Smith’s on­col­o­gist were de­nied be­cause they didn’t fol­low the stan­dard pro­to­col se­quence of med­i­ca­tions that Smith’s phar­macy ben­e­fit man­ager, CVS Care­mark, had in their guide­lines.

That means phar­macy ben­e­fit

man­agers have the au­thor­ity to trump a doc­tor’s med­i­cal judg­ment with­out see­ing pa­tients or knowing their full med­i­cal his­tory, and with­out ac­count­abil­ity for the con­se­quences of what happens to sick peo­ple.

Smith is among thou­sands of doc­u­mented cases of pa­tients who have been de­nied needed med­i­ca­tions in this way. Doc­tors and other med­i­cal pro­fes­sion­als say these de­nials are only ex­pected to get worse as the coun­try’s largest health insurance com­pa­nies and phar­ma­cies are in­creas­ingly join­ing forces.

These elu­sive mid­dle­men with the au­thor­ity to deny doc­tors’ pre­scrip­tions based on com­pany poli­cies are some­times re­ferred to as PBMs for short. Doc­tors and pa­tients be­lieve they are caus­ing life-threat­en­ing prob­lems for peo­ple like Smith.

The role PBMs play in health care is be­ing ex­am­ined in some pro­posed leg­is­la­tion re­lated to costly phar­ma­ceu­ti­cal drugs and pa­tients’ ac­cess to med­i­ca­tions.

“Ev­ery time we want to make a change (to med­i­ca­tions), we have to go through this whole process where some­one – and we don’t know who it is – some­one has the right and au­thor­ity to over­ride my judg­ment and what the patient needs,” said Smith’s on­col­o­gist, Dr. Ravi Rao, of cCare Can­cer Cen­ter in Fresno, “and that per­son is func­tion­ing with­out us hav­ing a re­course to it. He can do what­ever he wants, he or she, and I can’t call them and say, ‘Hey, by the way, what you’re say­ing doesn’t make sense,’ be­cause they are hiding be­hind all these pro­cesses, and we are strug­gling here.”


CVS Care­mark de­nied can­cer med­i­ca­tions pre­scribed by Rao for Smith sev­eral times over the past seven months. Each de­nial re­sulted in chal­leng­ing de­lays. In the worst in­stance, Smith waited nearly two months for a can­cer drug her doc­tor or­dered.

Rao said Smith’s health had de­te­ri­o­rated so much by the spring that she could have eas­ily died. At one point she was nearly bedrid­den, us­ing a walker to get to and from the bath­room.

“This whole process has been ex­tremely painful,” Rao said, “ex­tremely trau­matic for the patient and her fam­ily.”

Smith’s story is “an ex­am­ple of how bad things can get” for can­cer pa­tients who re­quire dif­fer­ent med­i­ca­tions than what phar­macy ben­e­fit man­agers con­sider stan­dard pro­to­col.

“You are mak­ing us prac­tice medicine based on some pol­icy or guide­line writ­ten by some­one else,” Rao said. “So if you are a patient who has some­thing slightly un­usual – and Norma is very un­usual in her dis­ease – if I say, ‘Hmm, you know what, this dis­ease is strange. We can­not fol­low the text­book guide­lines that are laid down by any agency,’ I’m out of luck.”

It wasn’t al­ways so hard to get med­i­ca­tions. Rao said for many years, insurance com­pa­nies would of­ten ask for prior au­tho­riza­tions, but the process was some­what stream­lined. “There were de­lays by a lit­tle bit, but not by a whole lot.”

Those de­lays in­creased sig­nif­i­cantly be­cause of phar­macy ben­e­fit man­agers, hired in re­sponse to ris­ing drug prices, Rao said. They act as “one more layer of bu­reau­cracy to go through be­fore we can give the patient the drug.”

Those can­cer drugs for Smith in­clude chemo­ther­apy infusions and in­jec­tions she re­ceives at cCare, along with pills she re­ceives in the mail. A phar­macy ben­e­fit man­ager is in­volved with au­tho­riz­ing all of that.

“Now if this was an iso­lated in­ci­dent by a com­pany that was un­usual, that would be one thing, but this happens to be a very com­mon prob­lem that we’re fac­ing,” Rao said. “Es­pe­cially over the last three to four years this whole PBM is­sue has be­come a huge is­sue, and when I talked about this to my col­leagues, ev­ery­one has sim­i­lar hor­ror sto­ries. And when I speak to my col­leagues in other states, it ap­pears that this is a prob­lem all over the coun­try.”

PBMs can work for a num­ber of dif­fer­ent en­ti­ties. In Smith’s case, she’s deal­ing with CVS Care­mark, the pre­scrip­tion ben­e­fit man­age­ment sub­sidiary of CVS Health, which con­trols what pills she re­ceives from a CVS Spe­cialty Phar­macy and the drugs she re­ceives via infusions and in­jec­tions at cCare.

And her insurance – a plan through An­them Blue Cross that costs around $500 a month – re­quires she use CVS.

But cus­tomers can’t ac­tu­ally visit a CVS Spe­cialty Phar­macy, ac­cord­ing to CVS. Can­cer pills are ei­ther mailed to a patient’s home or shipped to a reg­u­lar CVS store for pickup.

“My hus­band would call and be on the phone for five and six hours try­ing to ad­vo­cate for me,” Smith said, “try­ing to find out how he could work the sys­tem so he could get the needed drug for me so that I would live.

“I’m a hu­man be­ing. I’m not a used car. I have feel­ings. I’m a per­son. I want to live. I want to spend time with my grand­chil­dren. I want to quilt. I want to do things. I want to live.”


The first can­cer drug Smith re­ceived was a stan­dard, first-tier chemo­ther­apy med­i­ca­tion that she was able to get rel­a­tively quickly. Un­for­tu­nately, she had to stop tak­ing it af­ter a cou­ple weeks in Jan­uary be­cause she had a life-threat­en­ing al­ler­gic re­ac­tion, in­clud­ing trou­ble breath­ing and a se­vere head-to-toe rash.

Rao rec­om­mended she be switched to an­other can­cer drug, which was de­nied by the PBM. She was with­out needed medicine for nearly two months while her case was on “re­view” be­fore re­ceiv­ing new med­i­ca­tion.

As she waited, her can­cer grew and her liver func­tion de­te­ri­o­rated. She has a rare kind of myeloma that mainly in­volves her liver. She started los­ing a lot of weight and get­ting very sick.

“I wanted to shift her to a re­lated drug that does not have that re­ac­tion, and the insurance com­pany flatly re­fused; the PBM re­fused,” Rao said. “I spoke to some­one at the PBM and they faxed me a pro­to­col, basically say­ing that, ‘You do drug com­bi­na­tion A first, you go to drug com­bi­na­tion B, and only then will you get drug C,’ and what I was ask­ing for was drug C. And so I told the fam­ily, ‘Well, this is their pol­icy, so let’s go with drug com­bi­na­tion B.’ “

By the time Smith re­ceived her sec­ond chemo­ther­apy drug – in March – her can­cer was much worse. That “drug com­bi­na­tion B” that her phar­macy re­quired she take next wasn’t ef­fec­tive. Dur­ing this time, her liver also be­gan to fail, Rao said.

Her can­cer counts were much higher than when she was first di­ag­nosed. Myeloma cells make a protein called light chains, Rao ex­plained, and dur­ing this time they had in­creased to about 3,200. A nor­mal num­ber for some­one in re­mis­sion is 20.

Rao asked again for the drug he wanted for Smith. It was ap­proved, but only in com­bi­na­tion with an­other drug he didn’t want.

“The com­bi­na­tion that was their pro­to­col wasn’t what I thought was right be­cause of her de­te­ri­o­rat­ing liver and kid­ney func­tions,” Rao said. “And again, that led to an­other few weeks of back and forth, dur­ing which time I was giv­ing her just half the treat­ment I was plan­ning on giv­ing her.”

Rao was even­tu­ally able to get the whole treat­ment he wanted, but Smith had an­other se­vere re­ac­tion and had to stop tak­ing it. She needed to be switched a third time to an­other drug com­bi­na­tion.

“That com­bi­na­tion in­cluded a drug they had au­tho­rized in Jan­uary, but be­cause I was us­ing it in a sort of un­usual com­bi­na­tion – and that was based on clinical rea­son­ing – that rea­son­ing did not fit in with what they thought should be the third-line drug com­bi­na­tion, they again said no. Then it took an­other week or so, and this time the patient’s hus­band had learned the nu­ances of the process. He knew who to call, so I’m pretty sure he pushed a lot of but­tons there and, fi­nally, it got au­tho­rized.”

Rodney Smith said he had to go all the way up to a top ap­peals board su­per­vi­sor be­fore the drugs his wife needed were ap­proved.

The PBMs’ pro­to­col “was used to over­ride my clinical judg­ment each time,” Rao said. “Each time they said no, the patient suf­fered as a re­sult, and it led to the de­cline in her sta­tus by the time that we got to the right treat­ment.”

Since Smith has been tak­ing her new­est med­i­ca­tions, her health is dis­tinctly bet­ter.

Smith said it “took prac­ti­cally an act of God” to get the med­i­ca­tions her doc­tor wanted. She credits the per­sis­tence and knowl­edge of her hus­band and doc­tor in keep­ing her from dy­ing ear­lier this year. She knows many other can­cer pa­tients aren’t as for­tu­nate.


These phar­macy de­nials are also in­cred­i­bly frus­trat­ing for doc­tors try­ing to save pa­tients’ lives.

“Un­less I prove to the insurance com­pany that this patient is not go­ing to re­spond, then I’m out of luck,” Rao said. “Now un­for­tu­nately, the only way that we might get proof is if the patient gets much worse clin­i­cally. What if Norma’s liver had failed in the mean­while? I can never talk to the per­son who made the pol­icy. I don’t have ac­cess to some­one to say, ‘Hey, can you please change your pol­icy?’ The sys­tem is com­pletely opaque. We have no idea who is mak­ing the de­ci­sion.”

Rao said one of the strangest de­nials he re­ceived was af­ter re­quest­ing a stan­dard drug for a patient with stage-four kid­ney can­cer and tu­mors in his liver.

“So we get a phone call here to my staff say­ing that the phar­ma­cist – not the doc­tor, but the phar­ma­cist – to the PBM called and said they are deny­ing the drug.”

The rea­son given: The patient should have surgery to re­move his kid­ney first.

“I thought it was a joke,” Rao said.

Rao called that phar­ma­cist about the de­ci­sion.

“In that par­tic­u­lar in­stance, I got re­ally up­set,” Rao said. “I said, ‘The patient is too sick for surgery, and the sur­geon has said no.’ They said, ‘Please fax me the sur­geon’s note say­ing the patient is not a surgery can­di­date be­fore we ap­prove it.’

“Now, is that some­one who is sec­ond-guess­ing me, or is it some­one who is prac­tic­ing medicine? And who and why is that per­son prac­tic­ing medicine with­out see­ing the patient?

“What if I had sent the patient for surgery and the patient had a bad com­pli­ca­tion and died from it – who is re­spon­si­ble? Me or the sur­geon, not that per­son on the phone, who has zero re­spon­si­bil­ity. They have all the power but zero re­spon­si­bil­ity.”

Rao later learned from his col­leagues that they had re­ceived the same drug de­nials for their kid­ney can­cer pa­tients.

“That’s be­cause if the PBM phar­ma­cist or who is in charge says no, well guess what? They’ll save money there,” Rao said. “The money comes out from a dif­fer­ent pot. So the patient goes and gets surgery done, it comes out from a dif­fer­ent part of the insurance. It’s al­most like within the insurance com­pany, they have cre­ated lit­tle fief­doms, and each fief­dom is fight­ing with the oth­ers to say no to money that will come out of their pot.”


CVS Health pro­vided an

emailed state­ment about what hap­pened to Smith:

“We are com­mit­ted to de­liv­er­ing bet­ter patient ex­pe­ri­ences at lower over­all costs,” wrote Mike DeAn­ge­lis, se­nior di­rec­tor of corporate com­mu­ni­ca­tions at CVS Health.

“As part of that, for these types of ther­a­pies, pay­ers (i.e. insurance plans, em­ploy­ers, etc.) of­ten opt to em­ploy uti­liza­tion man­age­ment strate­gies, in­clud­ing prior au­tho­riza­tion, which can help en­sure that pa­tients ac­cess the most clin­i­cally ap­pro­pri­ate and cost ef­fec­tive med­i­ca­tion, and that the med­i­ca­tion is used in line with a drug’s in­di­ca­tion(s) and the clinical guide­lines.

“In this case, we worked with the patient’s doc­tor and in­surer to gain nec­es­sary ap­provals for the re­quired prior au­tho­riza­tion and we de­liv­ered all med­i­ca­tions that were pre­scribed by her doc­tor.”

Rao agreed that CVS did even­tu­ally de­liver med­i­ca­tions, “at least if the mean­ing of ‘de­liv­ered’ is con­strued nar­rowly.”

“CVS did, even­tu­ally – but be­lat­edly – get these life-sav­ing drugs to my patient,” Rao said. “It is as if a fire­man sat around watch­ing a house burn, and then fi­nally by act­ing at the last minute, put out the fire and then says, ‘See, I did my job.’ ”

But to get CVS to act, Rao said, it took “tremen­dous ef­fort” since PBMs’ med­i­cal de­ci­sions seem “to have taken prece­dence over the physi­cian’s clinical judg­ment.”

Rao said the drugs he wanted for Smith “were clearly pre­scribed com­pletely in ac­cor­dance with the drugs’ la­bels and were com­pletely in­di­cated for this patient’s con­di­tion, so it was not as if we were us­ing them off-la­bel, which ne­ces­si­tated so much ex­tra ef­fort.

“If my patient had been less mo­ti­vated, did not have a hus­band who was able to go above and be­yond most peo­ple, and if my of­fice had not been as dili­gent as we were, this patient may have likely died wait­ing for CVS to come through.”

On its web­site, CVS Health says it is “pi­o­neer­ing a bold new approach to total health” that in­cludes “a lead­ing phar­macy ben­e­fits man­ager with ap­prox­i­mately 94 mil­lion plan mem­bers.”

That phar­macy ben­e­fits man­ager, CVS Care­mark, was de­scribed on the web­site this way: “We work with em­ploy­ers, health insurance com­pa­nies, the gov­ern­ment and other health ben­e­fit pro­gram spon­sors to de­sign and ad­min­is­ter pre­scrip­tion cov­er­age plans and keep phar­macy costs low.”


Sit­ting at his wife’s side in a chemo­ther­apy clinic in July, Rodney Smith talked about how “insurance is not the prob­lem here, it’s just get­ting the med­i­ca­tion. I have the insurance.”

His wife’s doc­tor in­ter­jected.

“Ac­tu­ally, insurance is part of the prob­lem,” Rao said.

A num­ber of insurance com­pa­nies have pur­chased PBMs that de­lay the process, Rao said.

“The longer you don’t get the drug, the more money they save,” Rao said. “The other is­sue that happens is they say, ‘Well, you can only go through our PBM.’”

So it’s “play­ing a game,” Rao con­tin­ued, where a patient re­ceives an au­tho­riza­tion from insurance and thinks “it is some­one else’s fault that they are say­ing no – but both are owned by the same en­tity.”

Ted Okon, chief ex­ec­u­tive of­fi­cer of Com­mu­nity On­col­ogy Al­liance, has be­come an ex­pert in un­der­stand­ing this com­pli­cated sys­tem. He’s tes­ti­fied be­fore Congress on can­cer is­sues and is fre­quently on Capi­tol Hill dis­cussing can­cer care.

Okon’s on­col­ogy al­liance has doc­u­mented thou­sands of sto­ries like Smith’s to ad­vo­cate for pa­tients and med­i­cal pro­fes­sion­als strug­gling to get needed med­i­ca­tions.

Rao’s on­col­ogy of­fice, cCare, is a mem­ber of Com­mu­nity On­col­ogy Al­liance, an as­so­ci­a­tion of com­mu­nity can­cer clin­ics. Okon and Rao share sim­i­lar con­cerns about PBMs and the merg­ers of insurance com­pa­nies and phar­ma­cies.

“Es­pe­cially in the last three to four years, this has been a grow­ing prob­lem,” Okon said. “Un­for­tu­nately, I think it’s go­ing to get worse and the rea­son I say that is, num­ber one, we’ve seen mas­sive merg­ers in the PBM industry to get us where we are to­day. We have PBMs that ac­count for at least 80% of pre­scrip­tion drugs now.”

Okon listed the coun­try’s three largest health insurance-plus-phar­macy pairs – ac­count­ing for “mo­nop­o­lis­tic con­trol” of ap­prox­i­mately 80% of pre­scrip­tion drugs in the U.S.

1. CVS Health owns Aetna.

2. Cigna owns Ex­press Scripts.

3. Unit­edHealth Group owns Op­tumRx.

Insurance com­pa­nies can re­quire a patient only use cer­tain phar­ma­cies, as hap­pened to Smith.

“Part of the prob­lem now is that the free mar­ket is not hap­pen­ing,” Rao said. “Ev­ery­one talks about cap­i­tal­ism at work. This is cap­i­tal­ism not at work. The drug com­pa­nies and insurance com­pa­nies and the PBMs are ty­ing things up. There is a ver­ti­cal in­te­gra­tion hap­pen­ing.”

Okon said part of the prob­lem is PBMs also re­ceive “sweet­heart deals” – re­bate ar­range­ments on the drug man­u­fac­turer side that can guide drug selection based on prof­itabil­ity rather than what’s most ap­pro­pri­ate for a patient.

“For ex­am­ple, a phar­macy ben­e­fit man­ager will draft a list of ap­proved drugs, called a for­mu­lary, for an insurance com­pany,” wrote the Los An­ge­les Times in a story last year about Cigna pur­chas­ing Ex­press Scripts. “The phar­macy ben­e­fit man­ager will go to a drug com­pany and of­fer to in­clude that com­pany’s drug on its list. In re­turn, the drug com­pany might agree to of­fer a re­bate — say, $10 less on a $100 drug. The cus­tomer, how­ever, would still pay $100, and doesn’t see any di­rect ben­e­fit from the re­bate.”

The way these drugs are made avail­able to pa­tients is of­ten re­ferred to as “step ther­apy.” One ex­am­ple: Rao’s story about Smith’s phar­macy re­quir­ing her to use drug A and B be­fore get­ting drug C – even though Rao be­lieved Smith needed drug C af­ter drug A.


Rao said step ther­apy poli­cies used in Smith’s care con­trib­uted to her se­vere de­cline in health ear­lier this year.

“It’s just a num­bers game,” Rodney Smith said. “You kill off enough peo­ple and it works out for them, but it’s not very friendly for us. … We’re talk­ing about death here. This isn’t car sales. We need the med­i­ca­tion now – and I’m not even deal­ing with cost. I was lucky enough to pay for a very good insurance, but insurance doesn’t do much good if they don’t give you the med­i­ca­tion you need.”

Okon said he be­lieves the fed­eral gov­ern­ment didn’t think step ther­apy would be used in can­cer care but it has.

The hiring of phar­macy ben­e­fit man­agers and the im­ple­men­ta­tion of step ther­apy was sold as help­ing bring down costs.

“It’s ob­vi­ously right­minded that the ad­min­is­tra­tion wants to bring down drug prices,” Okon said, “but how you do that is an­other thing. … This is a huge mis­take, and it’s also go­ing to back­fire, but un­for­tu­nately back­fire means pa­tients die.”

Okon called step ther­apy poli­cies in can­cer care “noth­ing short of in­hu­mane.”

“They lit­er­ally have to fail first at can­cer treatments be­fore they get the next treat­ment, be­fore they get the treat­ment the physi­cian wants,” Okon said. “It’s re­ally al­most crim­i­nal in a way.”

He be­lieves it’s “only a mat­ter of time” be­fore a ma­jor law­suit is filed re­gard­ing this is­sue.

Okon’s wife is an on­col­ogy nurse. He hears sto­ries about how these is­sues harm her can­cer pa­tients on a daily ba­sis.

Memories of watch­ing his own father-in-law die with can­cer, and his brother sur­vive can­cer, also mo­ti­vates Okon in his ad­vo­cacy work.

“These are real peo­ple,” Okon said. “They aren’t statis­tics.”

Rao said cCare has 10 staff mem­bers whose only job is to deal with prior au­tho­riza­tions, de­nials and PBM is­sues, “an ex­tremely ex­pen­sive propo­si­tion” for their prac­tice.

He said it feels like there’s an “ele­phant on his back” as he tries to treat can­cer pa­tients.

“You can’t come into the room with the patient and say, ‘OK, this is what you have, this is what you need.’ It’s al­most like, ‘This is what I think you need, let’s see what your insurance au­tho­rizes and what the PBM does be­fore we get go­ing.’” Rao said. “And pa­tients very of­ten get frus­trated with us, say­ing, ‘Well, I have a can­cer. I would like it taken care of yes­ter­day.’ And I’m telling them the best-case sce­nario is we start some­thing in two weeks, or maybe three weeks.”

Rao said PBM is­sues come up at least one to two times a day be­tween the 12 on­col­o­gists treat­ing pa­tients at cCare in Fresno. That also takes an emo­tional toll on doc­tors.

“If I have three PBM is­sues in a day, I go home so frus­trated,” Rao said, “be­cause that sucks up 50% of my en­ergy.”

Rao said dis­ad­van­taged pa­tients in the Cen­tral Val­ley who have Medi-Cal – Med­i­caid in Cal­i­for­nia – are fac­ing these same prob­lems “two fold.”

“We are fac­ing enor­mous prob­lems with treat­ing poor pa­tients. … They’d prob­a­bly be bet­ter off if unin­sured,” Rao said. “It’s that bad.”

Rao called it a per­va­sive is­sue that’s gone “be­yond a joke.” Man­age­ment tac­tics seem to be to “throw sand in the gears” and refuse ev­ery doc­tor’s re­quest.

“If you have Medi-Cal, pure Medi-Cal, and it’s run by a man­age­ment med­i­cal com­pany, then you can be rest-as­sured that your care is com­pro­mised be­cause of that fact,” Rao said. “That is added onto the PBM is­sue. So ev­ery Medi-Cal has its own fa­vorite PBM and they also are hurt­ing pa­tients through that process.”


There are a num­ber of pend­ing fed­eral bills that at­tempt to deal with high drug costs and road­blocks to get­ting pa­tients’ med­i­ca­tions. Okon said there are three ma­jor ones pend­ing:

1. The Se­nate Com­mit­tee on Finance’s “The Pre­scrip­tion Drug Pric­ing Re­duc­tion Act (PDPRA) of 2019.”

2. “H.R.1035 Pre­scrip­tion Drug Price Trans­parency Act,” in­tro­duced by Rep. Doug Collins, R-Ge­or­gia.

3. “H.R.1034 - Phair Pric­ing Act of 2019,” also in­tro­duced by Collins.

Many of the can­cer pills Smith takes would cost around $600 per pill with­out insurance. She calls that “in­sane” and a “rack up.”

At a state level, 27 U.S. states had en­acted laws re­lated to step ther­apy as of Jan­uary, and seven had pend­ing leg­is­la­tion, Okon said.

In Cal­i­for­nia, leg­is­la­tion was passed in 2015 to help providers by­pass step ther­apy re­quire­ments: “AB-374 Health care cov­er­age: pre­scrip­tion drugs.”

Still, step ther­apy is­sues per­sist.

“This can­not seem le­gal to me,” Rao said of phar­ma­cies be­ing able to trump doc­tors’ orders, “but some­how this has been in­tro­duced. And I think un­less physi­cians, pa­tients and the pub­lic ex­presses its anger as to how this should be done, this will con­tinue. This is not ac­cept­able. This is caus­ing harm and you only hear about the peo­ple who are able to speak up.”

Okon said a num­ber of things need to hap­pen:

1. Elim­i­nate re­bates and deals PBMs can get for us­ing var­i­ous drugs, and make things transparen­t: “We have no idea what these sweet­heart deals are that these PBMs are get­ting.”

2. Watch out for monopolies: Okon said the U.S. De­part­ment of Jus­tice made a “mis­take” in al­low­ing CVS to buy Aetna last year.

3. More ed­u­ca­tion: Help­ing em­ploy­ers un­der­stand how their em­ploy­ees’ fam­i­lies can be hurt by these com­pa­nies.

4. No step ther­apy: It was an­other mis­take, Okon said, for Pres­i­dent Trump’s ad­min­is­tra­tion to al­low step ther­apy can­cer care in Medi­care Ad­van­tage plans. (That hap­pened in May via the U.S. De­part­ment of Health and Hu­man Ser­vices’ “Medi­care Ad­van­tage and Part D Drug Pric­ing Fi­nal Rule (CMS-4180-F).”)

And, pa­tients, med­i­cal pro­fes­sion­als, and com­mu­nity mem­bers bring­ing these is­sues to the at­ten­tion of phar­ma­cies, insurance com­pa­nies, and elected of­fi­cials.

Rao also is hop­ing for a law that makes those who deny care re­spon­si­ble for the con­se­quences of their ac­tions.


Smith shared a let­ter she re­ceived from CVS Care­mark in Fe­bru­ary, in­form­ing her that she would not be re­ceiv­ing a can­cer drug pre­scribed by her doc­tor.

“Stan­dard Po­m­a­lyst Pol­icy states: Cov­er­age of Po­m­a­lyst for mul­ti­ple myeloma is pro­vided when the patient has used 2 or more treat­ment reg­i­mens in the past be­fore re­quest­ing the use of Po­m­a­lyst,” the let­ter reads. “The in­for­ma­tion pro­vided by the pre­scriber does not in­di­cate that this con­di­tion is met. Based on the in­for­ma­tion pro­vided by the pre­scriber, use of Po­m­a­lyst is not cov­ered by the plan.”

The let­ter states that the de­ci­sion can be ap­pealed by mail or fax.

“You may ask for a free copy of the ac­tual ben­e­fit pro­vi­sion, guide­line, pro­to­col or other sim­i­lar cri­te­rion used to make the de­ci­sion,” the let­ter con­tin­ues, “and any other in­for­ma­tion re­lated to this de­ci­sion by calling Cus­tomer Care toll-free at the num­ber on your ben­e­fit ID card.”

The let­ter goes on to say that CVS can dis­cuss the de­ci­sion with the patient’s doc­tor.

“If your pre­scriber would like to dis­cuss this de­ci­sion with a clinical re­viewer at CVS Care­mark, your pre­scriber can call CVS Care­mark, and we will ar­range to make some­one avail­able to speak with your pre­scriber.” Smith wants a more “user-friendly” and “propa­tient” sys­tem.

She’s fi­nally found a treat­ment regime that’s work­ing for her body and killing her can­cer: All-day chemo­ther­apy infusions ev­ery other week, a weekly chemo shot in the stomach, and can­cer pills. But her most re­cent pre­scrip­tion for 40 pills just ran out.

Smith ex­pects Rao will want to or­der more dur­ing her next doc­tor’s appointmen­t later this month. She’s worried a CVS phar­macy ben­e­fit man­ager will again ob­ject, re­sult­ing in an­other de­lay.

Her can­cer counts have dropped from over 3,200 at their worst to around 400. She wants those num­bers to keep drop­ping to near zero so she can be con­sid­ered healthy enough for a po­ten­tially life-sav­ing bone mar­row trans­plant.

“And for me as a patient who is go­ing through chemo­ther­apy, I’m try­ing to live,” Smith said. “I’m fight­ing for my life. This has been a very stress­ful time for me. It’s kept me awake at night with anx­i­ety, won­der­ing if my drugs are go­ing to be ap­proved. …

“I’ve been go­ing through this can­cer jour­ney for seven months now and I’m try­ing very hard to keep up­beat and to be strong, but I need bet­ter sup­port from the phar­ma­ceu­ti­cal com­pa­nies to help me as a patient and to help other pa­tients that go through this.

“We want to live. We want the best chance to live, but we need the cor­rect med­i­ca­tions to do so.”


JOHN WALKER [email protected]­

At Norma Smith’s side in her jour­ney through can­cer is hus­band Rod, as they not only bat­tle the dis­ease, but PBMs – phar­macy ben­e­fit man­agers – the “med­i­cal mid­dle­men,” in try­ing to secure proper treat­ment as pre­scribed by her on­col­o­gist Dr. Ravi Rao.

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