Drug­mak­ers’ dol­lars raise ques­tions

Does fund­ing of pa­tient groups reap ben­e­fits?

USA TODAY Weekend Extra - - NEWS - Emily Kopp, Syd­ney Lup­kin and El­iz­a­beth Lu­cas

Phar­ma­ceu­ti­cal com­pa­nies gave at least $116 mil­lion to pa­tient ad­vo­cacy groups in a sin­gle year, re­veals a new data­base log­ging 12,000 do­na­tions from large pub­licly traded drug­mak­ers to such or­ga­ni­za­tions.

Even as these pa­tient groups grow in num­ber and po­lit­i­cal in­flu­ence, their fund­ing and their re­la­tion­ships to drug­mak­ers are lit­tle un­der­stood. Un­like pay­ments to doc­tors and lob­by­ing ex­penses, com­pa­nies do not have to re­port pay­ments to the groups.

The data­base, called “Pre$crip­tion for Power,” shows that do­na­tions to pa­tient ad­vo­cacy groups tal­lied for 2015 — the most re­cent full year in which doc­u­ments re­quired by the In­ter­nal Rev­enue Ser­vice were avail­able — dwarfed the to­tal amount the com­pa­nies spent on fed­eral lob­by­ing. The 14 com­pa­nies that contributed $116 mil­lion to pa­tient ad­vo­cacy groups re­ported only about $63 mil­lion in lob­by­ing ac­tiv­i­ties that same year.

Though their pri­mary mis­sions are to fo­cus at­ten­tion on the needs of pa­tients with a par­tic­u­lar dis­ease — such as arthri­tis, heart dis­ease or var­i­ous can­cers — some groups ef­fec­tively sup­ple­ment the work lob­by­ists per­form, pro­vid­ing pa­tients to tes­tify on Capi­tol Hill and or­ga­niz­ing let­ter-writ­ing and so­cial me­dia cam­paigns that are ben­e­fi­cial to phar­ma­ceu­ti­cal com­pa­nies.

Six drug­mak­ers, the data show, contributed a mil­lion dol­lars or more to in­di­vid­ual groups that rep­re­sent pa­tients who rely on their drugs. The data­base iden­ti­fies more than 1,200 pa­tient groups. Of those, 594 ac­cepted money from the drug­mak­ers in the data­base.

The fi­nan­cial ties are trou­bling if they cause even one pa­tient group to act in a way that’s “not fully rep­re­sent­ing the in­ter­est of its con­stituents,” said Matthew McCoy, a med­i­cal ethics pro­fes­sor at the Univer­sity of Penn­syl­va­nia who co-au­thored a 2017 study about pa­tient ad­vo­cacy groups’ in­flu­ence and trans­parency.

No­tably, such groups have been silent or slow to com­plain about high or es­ca­lat­ing prices, a prime con­cern of pa­tients.

“When so many pa­tient or­ga­ni­za­tions are be­ing in­flu­enced in this way, it can shift our whole ap­proach to health pol­icy, tak­ing away from the in­ter­ests of pa­tients and to­wards the in­ter­ests of in­dus­try,” McCoy said. “That’s not just a prob­lem for the pa­tients and care­givers that par­tic­u­lar pa­tient or­ga­ni­za­tions serve; that’s a prob­lem for ev­ery­one.”

Bris­tol-My­ers Squibb pro­vides a stark ex­am­ple of how pa­tient groups are val­ued. In 2015, it spent more than $20.5 mil­lion on pa­tient groups, com­pared with $2.9 mil­lion on fed­eral lob­by­ing and less than $1 mil­lion on ma­jor trade as­so­ci­a­tions, ac­cord­ing to pub­lic records and com­pany dis­clo­sures. The com­pany said its de­ci­sions re­gard­ing lob­by­ing and con­tri­bu­tions to pa­tient groups are “un­re­lated.”

“Bris­tol-My­ers Squibb is fo­cused on sup­port­ing a health care en­vi­ron­ment that re­wards in­no­va­tion and en­sures ac­cess to medicines for pa­tients,” said spokes­woman Laura Hor­tas. “The com­pany sup­ports pa­tient or­ga­ni­za­tions with this shared ob­jec­tive.”

The first-of-its-kind data­base, com­piled by Kaiser Health News, tal­lies the money from Big Pharma to pa­tient groups. KHN ex­am­ined the 20 phar­ma­ceu­ti­cal firms in­cluded in the S&P 500, 14 of which were trans­par­ent — to vary­ing de­grees — about giv­ing money to pa­tient groups.

It spot­lights do­na­tions pharma com­pa­nies made to pa­tient groups large and small. The re­cip­i­ents in­clude well­known dis­ease groups, like the Amer­i­can Di­a­betes As­so­ci­a­tion, with rev­enues of hun­dreds of mil­lions of dol­lars; high-profile foun­da­tions like Su­san G. Komen, a pa­tient group fo­cused on breast can­cer; and smaller, lesser­known groups, like the Car­ing Am­bas­sadors Pro­gram, which fo­cuses on lung can­cer and hep­ati­tis C.

The data show that 15 pa­tient groups — with an­nual rev­enues as large as $3.6 mil­lion — re­lied on the phar­ma­ceu­ti­cal com­pa­nies for at least 20% of their rev­enue, and some re­lied on them for more than half their rev­enue.

“It’s clear that more trans­parency in this space is vi­tally im­por­tant,” said Sen. Claire McCaskill, D-Mo., who has been in­ves­ti­gat­ing the links be­tween pa­tient ad­vo­cates and opi­oid man­u­fac­tur­ers and is con­sid­er­ing leg­is­la­tion to track fund­ing. “This data­base is one step for­ward in that ef­fort, but we also need Congress to act.”

The fi­nan­cial ties be­tween drug­mak­ers and the or­ga­ni­za­tions that rep­re­sent those who use or pre­scribe their block­buster medicines have been of grow­ing con­cern as drug prices es­ca­late. The Se­nate in­ves­ti­gated con­flicts of in­ter­est in the run-up to the pas­sage of the 2010 Physi­cian Pay­ments Sun­shine Act — a law that re­quired pay­ments to physi­cians from mak­ers of drugs and de­vices to be reg­is­tered on a pub­lic web­site — but pa­tient groups were not ad­dressed in the bill.

Some of the pa­tient groups with ties to trade groups echo in­dus­try talk­ing points in me­dia cam­paigns and let­ters to fed­eral agen­cies — and do lit­tle else. Some send pa­tients up­dates on the new­est drugs and in­dus­try prod­ucts.

“It’s through groups like this that pa­tients of­ten learn about ill­nesses and treat­ments,” said Rick Clay­pool, a re­search di­rec­tor for Pub­lic Ci­ti­zen, a con­sumer ad­vo­cacy group that says it does not ac­cept phar­ma­ceu­ti­cal fund­ing.

Kaiser Health News is an ed­i­to­ri­ally in­de­pen­dent pro­gram of the Henry J. Kaiser Fam­ily Foun­da­tion and is not af­fil­i­ated with Kaiser Per­ma­nente.

GETTY IMAGES/ISTOCKPHOTO

Pa­tient ad­vo­cacy groups have been no­tably quiet about es­ca­lat­ing drug prices, which pose a se­ri­ous prob­lem for many pa­tients.

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