1
00:00:01,869 --> 00:00:02,970
Bradley, thank you for your
time.

2
00:00:03,036 --> 00:00:04,838
>> Thanks.
>> Zach.

3
00:00:05,506 --> 00:00:08,208
>> For decades, the cost of
prescription medication has

4
00:00:08,275 --> 00:00:11,445
been ever increasing. At the
same time, health coverage

5
00:00:11,512 --> 00:00:14,281
for medication has been
decreasing, forcing patients

6
00:00:14,348 --> 00:00:17,451
to make harder decisions
about their health. Over the

7
00:00:17,518 --> 00:00:20,621
next few weeks, we bring you
RX uncovered, a series from

8
00:00:20,687 --> 00:00:23,690
“Here& Now” producer Marissa
Wojcik that dives into the

9
00:00:23,757 --> 00:00:26,593
complex systems driving
these trends and the stories

10
00:00:26,660 --> 00:00:29,863
of patients facing life or
death choices. Our first

11
00:00:29,930 --> 00:00:32,699
story is about a young man
with asthma who suddenly had

12
00:00:32,766 --> 00:00:37,504
to choose between affording
his rent or his medicine.

13
00:00:37,571 --> 00:00:40,841
>> Well, we got told, you
know, just simply that he

14
00:00:40,908 --> 00:00:43,544
would never wake up.
>> Brill and Shanon

15
00:00:43,610 --> 00:00:45,579
Schmidtknecht had just heard
the worst news of their

16
00:00:45,646 --> 00:00:48,182
life.
>> That all I remember is

17
00:00:48,248 --> 00:00:53,587
collapsing on him and the
nurses sliding chairs behind

18
00:00:53,654 --> 00:00:55,722
us.
>> Their oldest son, Kohl,

19
00:00:55,789 --> 00:00:59,126
suffered an asthma attack.
His roommate rushed him to

20
00:00:59,193 --> 00:01:02,196
the ER and his heart stopped
beating two minutes before

21
00:01:02,262 --> 00:01:04,932
they arrived.
>> When he arrived at the

22
00:01:04,998 --> 00:01:09,002
hospital, he was lifeless.
Yeah. No pulse. They had to

23
00:01:09,069 --> 00:01:10,771
resuscitate him.
>> But the prognosis wasn't

24
00:01:10,838 --> 00:01:13,073
good.
>> They were no longer

25
00:01:13,140 --> 00:01:16,410
seeing the brain activity.
They were no longer seeing

26
00:01:16,476 --> 00:01:21,181
any hope that there would be
any type of recovery, that

27
00:01:21,248 --> 00:01:23,951
essentially what we saw
laying in the hospital of

28
00:01:24,017 --> 00:01:27,354
our son was all that he
would ever be.

29
00:01:28,889 --> 00:01:32,326
>> The 22 year old laying in
that hospital just days

30
00:01:32,392 --> 00:01:35,295
earlier was happy and
healthy. Bill and Shannon

31
00:01:35,362 --> 00:01:38,732
were mystified.
>> Yes. When I grab on to

32
00:01:38,799 --> 00:01:41,768
him, like I just couldn't,
you're like, this cannot be

33
00:01:41,835 --> 00:01:44,037
happening.
>> In the days that

34
00:01:44,104 --> 00:01:46,840
followed, Bill and Shannon
watched their son fulfill an

35
00:01:46,907 --> 00:01:50,210
organ donation before
watching him take his final

36
00:01:50,277 --> 00:01:52,613
breath.
>> Kohl had had asthma his

37
00:01:52,679 --> 00:01:56,950
whole life. He was on a
great that stabilized his

38
00:01:57,017 --> 00:02:01,154
asthma for the past decade
or more. So we were like,

39
00:02:01,221 --> 00:02:04,091
this cannot be.
>> Still in shock. They

40
00:02:04,157 --> 00:02:07,060
didn't understand how this
could have happened and why

41
00:02:07,127 --> 00:02:09,563
Kohl didn't have his
medication.

42
00:02:09,630 --> 00:02:12,065
>> I will never forget that
day.

43
00:02:12,132 --> 00:02:15,736
>> Their quest for answers
began as grieving parents.

44
00:02:15,802 --> 00:02:19,873
More than a year later, they
retell Kohl story, hoping

45
00:02:19,940 --> 00:02:21,508
for change.
>> We always felt there was

46
00:02:21,575 --> 00:02:24,578
something that was
unanswered.

47
00:02:25,212 --> 00:02:28,448
was from Cole's best friend
and roommate, who said Cole

48
00:02:28,515 --> 00:02:31,818
did go to the pharmacy days
earlier but couldn't get his

49
00:02:31,885 --> 00:02:35,255
asthma medication refilled.
>> His roommate had said, I

50
00:02:35,322 --> 00:02:38,625
don't know. We tried to get
it a few days ago and he

51
00:02:38,692 --> 00:02:42,296
couldn't afford it. It was
like $500 and we were like,

52
00:02:42,362 --> 00:02:45,132
no, no, no, no. There has to
be like something, something

53
00:02:45,199 --> 00:02:48,368
happened. Like he didn't
give.

54
00:02:48,435 --> 00:02:51,471
managed the same chronic
asthma their whole lives.

55
00:02:51,538 --> 00:02:54,374
They used the same
prescription inhaler and

56
00:02:54,441 --> 00:02:56,944
they worked for the same
company, meaning they had

57
00:02:57,010 --> 00:02:59,813
the same health coverage.
>> Probably a few weeks

58
00:02:59,880 --> 00:03:02,783
later, texted her, say, hey,
can you swing by the

59
00:03:02,850 --> 00:03:04,484
pharmacy and grab my steroid
medicine too?

60
00:03:04,551 --> 00:03:07,187
>> I just remember walking
in and she had it written

61
00:03:07,254 --> 00:03:11,725
down on a piece of paper. No
longer covered by insurance.

62
00:03:11,792 --> 00:03:14,428
She worked her magic and
made a phone call. Even

63
00:03:14,494 --> 00:03:17,698
stayed after they were open
and, you know, did what she

64
00:03:17,764 --> 00:03:20,634
had to do to get something
for me to take home so that

65
00:03:20,701 --> 00:03:24,104
he had something.
>> This was the first

66
00:03:24,171 --> 00:03:26,106
glimpse into what may have
happened in the days leading

67
00:03:26,173 --> 00:03:29,710
up to Cole's death. Health
coverage from the employer

68
00:03:29,776 --> 00:03:33,547
had changed, and with it,
the out-of-pocket cost.

69
00:03:33,614 --> 00:03:37,184
>> They were told
specifically as employees

70
00:03:37,251 --> 00:03:40,687
that it would be a seamless
transition. Pharmacy

71
00:03:40,754 --> 00:03:43,223
benefits would be seamless.
Prescription coverage would

72
00:03:43,290 --> 00:03:45,792
be seamless.
>> The unique thing, though,

73
00:03:45,859 --> 00:03:49,096
is we stayed with the same
pharmacy benefit manager.

74
00:03:49,162 --> 00:03:51,565
>> What did change without
their knowledge was their

75
00:03:51,632 --> 00:03:54,201
prescription benefits
formulary. The list of

76
00:03:54,268 --> 00:03:57,471
preferred drugs covered by
the health plan. These lists

77
00:03:57,538 --> 00:04:01,808
are compiled of name, brand
and generic medications

78
00:04:01,875 --> 00:04:05,646
categorized into tiers. Tier
one is the most preferred by

79
00:04:05,712 --> 00:04:09,616
the plan and has the lowest
co-pays. The higher the

80
00:04:09,683 --> 00:04:13,453
tier, the more the patient
pays out of pocket.

81
00:04:13,520 --> 00:04:15,856
>> I will never forget that
leaving that pharmacy and

82
00:04:15,923 --> 00:04:20,894
being like, oh my God, this
is what happened to Cole.

83
00:04:20,961 --> 00:04:24,164
>> The preventative asthma
medication that Cole relied

84
00:04:24,231 --> 00:04:27,234
upon was moved to a higher
tier that he suddenly could

85
00:04:27,301 --> 00:04:30,103
not afford.
>> We always assume that he

86
00:04:30,170 --> 00:04:33,106
kind of ran some life
choices and said, rent or

87
00:04:33,173 --> 00:04:36,677
this, and thought he could
do without it. Five days

88
00:04:36,743 --> 00:04:40,647
after that, he texted me
that he was having a hard

89
00:04:40,714 --> 00:04:43,550
time breathing.
>> The parallel details

90
00:04:43,617 --> 00:04:46,787
around Bill and Cole's
condition, medication and

91
00:04:46,854 --> 00:04:50,324
health plan helped the
Schmidtknecht understand how

92
00:04:50,390 --> 00:04:53,694
Cole's pharmacy visit
differed from Bill's.

93
00:04:53,760 --> 00:04:57,397
>> The difference is he
didn't have this pharmacist

94
00:04:57,464 --> 00:05:01,502
or any caring independent
pharmacist or whomever to

95
00:05:01,568 --> 00:05:04,838
stop for five seconds.
>> Bill's pharmacist made

96
00:05:04,905 --> 00:05:08,475
sure he got the life saving
medication he needed.

97
00:05:08,542 --> 00:05:12,212
>> She was like, so we got
to figure this out. You're

98
00:05:12,279 --> 00:05:13,614
not leaving here with
nothing for him, for Bill.

99
00:05:13,680 --> 00:05:16,783
>> While no one can know for
sure what happened to Cole

100
00:05:16,850 --> 00:05:19,620
at the pharmacy that day,
many, including bills

101
00:05:19,686 --> 00:05:23,056
pharmacist, are convinced.
>> Honestly, she believes

102
00:05:23,123 --> 00:05:26,493
this is what contributed to
that he didn't get his

103
00:05:26,560 --> 00:05:28,996
medicine. Walking out of the
pharmacy. You know, she she

104
00:05:29,062 --> 00:05:31,899
can't make that judgment for
sure, but she felt that way.

105
00:05:31,965 --> 00:05:35,169
>> And you could tell he was
the love of her life. One

106
00:05:35,235 --> 00:05:38,839
day, him and I were laying
in the yard looking up at

107
00:05:38,906 --> 00:05:43,977
the sky. He looked at me and
said, grandpa, when you eat

108
00:05:44,044 --> 00:05:47,948
the heaven, would you save
me a seat by you?

109
00:05:50,517 --> 00:05:53,620
>> In March, Senate
President Mary Felzkowski

110
00:05:53,687 --> 00:05:56,323
reintroduced legislation
that she and the

111
00:05:56,390 --> 00:06:01,962
Schmidtknecht believe could
medication. At some point,

112
00:06:02,029 --> 00:06:04,464
somebody has to say enough
is enough and put some

113
00:06:04,531 --> 00:06:06,767
guardrails around this.
>> The bill contains a

114
00:06:06,834 --> 00:06:09,570
number of measures aimed at
protecting independent

115
00:06:09,636 --> 00:06:12,573
pharmacies and adding
regulations against pharmacy

116
00:06:12,639 --> 00:06:17,277
benefit managers, or PBMs.
>> PBMs are essentially a

117
00:06:17,344 --> 00:06:20,747
middleman hired by insurance
companies to manage patient

118
00:06:20,814 --> 00:06:24,017
prescription drug benefit
programs. And they're

119
00:06:24,084 --> 00:06:27,821
actually adversely driving
up the cost of drugs and

120
00:06:27,888 --> 00:06:29,690
controlling whether or not
you get the medication

121
00:06:29,756 --> 00:06:32,659
that's been prescribed to
you.

122
00:06:32,726 --> 00:06:36,129
>> Newly dubbed Cole's Act,
this is the third time the

123
00:06:36,196 --> 00:06:38,799
multi-pronged legislation
has been authored.

124
00:06:38,866 --> 00:06:42,436
>> I watched what happened
with the first PBM bill. It

125
00:06:42,503 --> 00:06:44,805
got really stripped down in
the Assembly. We're not

126
00:06:44,872 --> 00:06:46,773
going to allow that to
happen this time around. We

127
00:06:46,840 --> 00:06:50,844
are going to pass meaningful
legislation.

128
00:06:51,378 --> 00:06:54,815
deals specifically with drug
formularies, saying a plan

129
00:06:54,882 --> 00:06:58,018
cannot change a drug's tier
except at the time of

130
00:06:58,085 --> 00:07:01,622
coverage renewal.
Historically, employer and

131
00:07:01,688 --> 00:07:03,857
insurance groups have
opposed this legislation,

132
00:07:03,924 --> 00:07:07,194
fearing it will increase
costs.

133
00:07:07,261 --> 00:07:09,763
>> Marketplace events occur
throughout throughout the

134
00:07:09,830 --> 00:07:13,667
year that impact the price
of prescription drugs by

135
00:07:13,734 --> 00:07:16,170
implementing a frozen
formulary. Payers and plans

136
00:07:16,236 --> 00:07:18,805
will be limited in their
ability to take advantage of

137
00:07:18,872 --> 00:07:21,708
new reduced prices. Generic.
>> We're going to work very

138
00:07:21,775 --> 00:07:25,078
hard on showing them through
data from other states that

139
00:07:25,145 --> 00:07:28,215
have allowed that have the
same legislation, where it's

140
00:07:28,282 --> 00:07:30,951
actually lowered the cost of
health care.

141
00:07:31,018 --> 00:07:33,954
>> I can't believe it's been
almost a year that he's gone.

142
00:07:34,021 --> 00:07:36,256
Yeah, exactly.
>> One year after Cole's

143
00:07:36,323 --> 00:07:39,026
passing, his parents filed a
negligence lawsuit against

144
00:07:39,092 --> 00:07:42,563
the pharmacy benefit manager
and the chain pharmacy where

145
00:07:42,629 --> 00:07:45,933
Cole went to try and pick up
his inhaler. The complaint

146
00:07:45,999 --> 00:07:49,570
says no notification went
out that the formulary had

147
00:07:49,636 --> 00:07:52,172
changed, and the pharmacist
should have offered a

148
00:07:52,239 --> 00:07:55,943
generic alternative. It
lists a number of points of

149
00:07:56,009 --> 00:08:00,080
failure, many of which
violate Wisconsin law. In a

150
00:08:00,147 --> 00:08:03,450
motion to dismiss, the PBM
argues that because Cole's

151
00:08:03,517 --> 00:08:07,054
health plan is what's called
self-funded, these types of

152
00:08:07,120 --> 00:08:10,157
employer sponsored benefits
are not technically health

153
00:08:10,224 --> 00:08:12,392
insurance. They're largely
not subject to state law,

154
00:08:12,459 --> 00:08:15,996
and exclusively a federal
concern.

155
00:08:16,063 --> 00:08:18,765
>> We can't keep waiting for
Washington. My constituents

156
00:08:18,832 --> 00:08:21,902
can't afford to keep waiting
for Washington on a number

157
00:08:21,969 --> 00:08:26,874
of things. And I believe in
states rights. And it's time

158
00:08:26,940 --> 00:08:29,843
that the states need to step
up. You know, we have the

159
00:08:29,910 --> 00:08:33,180
fifth highest health care
costs in the nation. And our

160
00:08:33,247 --> 00:08:36,083
quality does not reflect
that.

161
00:08:36,149 --> 00:08:38,252
>> Congressional committees
and federal agencies have

162
00:08:38,318 --> 00:08:41,822
been sounding some alarm on
practices rampant across the

163
00:08:41,889 --> 00:08:45,092
industry. In January, the
Federal Trade Commission

164
00:08:45,158 --> 00:08:48,729
released its latest report
investigating the top three

165
00:08:48,795 --> 00:08:52,266
PBM companies for inflating
drug prices, saying

166
00:08:52,332 --> 00:08:56,503
UnitedHealth group's Optumrx,
CVS Caremark and Cigna

167
00:08:56,570 --> 00:08:59,640
Express Scripts increased
prices hundreds or thousands

168
00:08:59,706 --> 00:09:04,444
of times over, putting $7.3
billion back into their

169
00:09:04,511 --> 00:09:09,082
pockets from 2017 to 2022.
Amid a complex system.

170
00:09:10,317 --> 00:09:12,786
Cole's parents believe more
should have been done.

171
00:09:12,853 --> 00:09:15,889
>> How will this bill have
saved Cole?

172
00:09:15,956 --> 00:09:17,791
>> I'm going to defer to
Cole's dad for that.

173
00:09:17,858 --> 00:09:22,429
>> The reality is, any
portion of a bill that would

174
00:09:23,030 --> 00:09:25,866
prevent the slowdown at the
pharmacy counter. There's so

175
00:09:25,933 --> 00:09:30,037
many Harry Dunn this. Or had
he went to this type of

176
00:09:30,103 --> 00:09:31,505
pharmacy, the ultimate
thing, no matter what

177
00:09:31,572 --> 00:09:33,607
happens, it was totally
preventable. I mean, like,

178
00:09:33,674 --> 00:09:37,244
it was preventable. Please
don't let another parent

179
00:09:37,311 --> 00:09:40,514
stand where we are today.
>> We've just taken a

180
00:09:40,581 --> 00:09:43,650
totally different look at so
many things in life. It's

181
00:09:43,717 --> 00:09:46,820
all because this cannot
happen. This cannot happen

182
00:09:46,887 --> 00:09:51,358
to another family.
>> Reporting from Poynette.