03/02/2017 03:00 PM House HEALTH & SOCIAL SERVICES
| Audio | Topic |
|---|---|
| Start | |
| HB123 | |
| HB43 | |
| Presentation: Key Coalition | |
| Adjourn |
+ teleconferenced
= bill was previously heard/scheduled
| *+ | HB 123 | TELECONFERENCED | |
| += | HB 43 | TELECONFERENCED | |
| + | TELECONFERENCED | ||
| + | TELECONFERENCED |
ALASKA STATE LEGISLATURE
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
March 2, 2017
3:10 p.m.
MEMBERS PRESENT
Representative Ivy Spohnholz, Chair
Representative Geran Tarr
Representative David Eastman
Representative Jennifer Johnston
Representative Colleen Sullivan-Leonard
Representative Matt Claman (alternate)
Representative Dan Saddler (alternate)
MEMBERS ABSENT
Representative Bryce Edgmon, Vice Chair
Representative Sam Kito
COMMITTEE CALENDAR
HOUSE BILL NO. 123
"An Act relating to disclosure of health care services and price
information; and providing for an effective date."
- HEARD & HELD
HOUSE BILL NO. 43
"An Act relating to prescribing, dispensing, and administering
an investigational drug, biological product, or device by
physicians for patients who are terminally ill; providing
immunity related to manufacturing, distributing, or providing
investigational drugs, biological products, or devices; and
relating to licensed health care facility requirements."
- HEARD & HELD
PRESENTATION: KEY COALITION
- HEARD
PREVIOUS COMMITTEE ACTION
BILL: HB 123
SHORT TITLE: DISCLOSURE OF HEALTH CARE COSTS
SPONSOR(s): REPRESENTATIVE(s) SPOHNHOLZ
02/13/17 (H) READ THE FIRST TIME - REFERRALS
02/13/17 (H) HSS, JUD
03/02/17 (H) HSS AT 3:00 PM CAPITOL 106
BILL: HB 43
SHORT TITLE: NEW DRUGS FOR THE TERMINALLY ILL
SPONSOR(s): REPRESENTATIVE(s) GRENN
01/18/17 (H) PREFILE RELEASED 1/13/17
01/18/17 (H) READ THE FIRST TIME - REFERRALS
01/18/17 (H) HSS, JUD
02/28/17 (H) HSS AT 3:00 PM CAPITOL 106
02/28/17 (H) Heard & Held
02/28/17 (H) MINUTE(HSS)
03/02/17 (H) HSS AT 3:00 PM CAPITOL 106
WITNESS REGISTER
BERNICE NISBETT, Staff
Representative Ivy Spohnholz
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Testified during the presentation of HB
123, on behalf of the bill sponsor, Representative Spohnholz.
JILL LEWIS, Deputy Director - Juneau
Central Office
Division of Public Health
Department of Health and Social Services
Juneau, Alaska
POSITION STATEMENT: Answered questions during presentation of
HB 123.
BECKY HULTBERG, President/CEO
Alaska State Hospital and Nursing Home Association
Juneau, Alaska
POSITION STATEMENT: Testified and answered questions during the
presentation of HB 123.
JOHN ZASADA
Policy Integration Director
Alaska Primary Care Association (APCA)
Anchorage, Alaska
POSITION STATEMENT: Testified during discussion of HB 123.
BROOKE IVY, Staff
Representative Jason Grenn
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Presented HB 43 on behalf of the bill
sponsor, Representative Grenn.
KEN LANDFIELD
Homer, Alaska
POSITION STATEMENT: Testified in support of HB 43.
ELIZABETH KROME, Nurse
Wasilla, Alaska
POSITION STATEMENT: Testified in support of HB 43.
MIKE MAHARREY
National Communications Director
Tenth Amendment Center
Lexington, Kentucky
POSITION STATEMENT: Testified in support of HB 43.
JASON NORRIS
Anchorage, Alaska
POSITION STATEMENT: Testified in support of HB 43.
MILLIE RYAN, Chair
Key Coalition of Alaska
Executive Director
REACH, Inc.
Juneau, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
EMILY ENNIS, Executive Director
Fairbanks Resource Agency
Key Coalition of Alaska
Fairbanks, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
ADDISON TURNBOW
Fairbanks, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
SHELLY VENDETTI VUCKOVICH
POSITION STATEMENT: Testified during the Key Campaign
presentation.
ALLEN RAY
Simply Home
Arden, North Carolina
POSITION STATEMENT: Testified during the Key Campaign
presentation.
JASON RAY
Simply Home
Arden, North Carolina
POSITION STATEMENT: Testified during the Key Campaign
presentation.
ACTION NARRATIVE
3:10:16 PM
CHAIR IVY SPOHNHOLZ called the House Health and Social Services
Standing Committee meeting to order at 3:10 p.m.
Representatives Spohnholz, Tarr, Johnston and Claman (alternate)
were present at the call to order. Representatives Sullivan-
Leonard, Eastman, and Saddler (alternate) arrived as the meeting
was in progress.
HB 123-DISCLOSURE OF HEALTH CARE COSTS
3:10:52 PM
CHAIR SPOHNHOLZ announced that the first order of business would
be HOUSE BILL NO. 123, "An Act relating to disclosure of health
care services and price information; and providing for an
effective date."
3:11:50 PM
CHAIR SPOHNHOLZ, as the sponsor of proposed HB 123, declared
that "knowledge is power." She stated that health care was the
only industry in which the consumers did not know the price
prior to the purchase or utilization of services. She noted
that this was the removal of "one of the fundamental tenets of
capitalism, that is the power of the consumer to make choices
about what they do or they don't purchase." She offered an
example for a colleague who had sustained an injury and the
subsequent expensive testing and recommended treatment. She
shared that, after the testing, the colleague had questioned the
need for the test, as the test had not altered the course of
treatment. She shared that proposed HB 123 provided consumer
pricing transparency which was simple and clean to implement,
without adding any additional cost to the state.
3:14:32 PM
BERNICE NISBETT, Staff, Representative Ivy Spohnholz, Alaska
State Legislature, stated that the intent of the bill sponsor,
Representative Spohnholz, was to create a foundation to increase
price transparency in health care in Alaska. She said that
transparency and access to health care costs would empower
consumers to take more financial responsibility for their health
care. She explained that the proposed bill required health care
providers and facilities to display the undiscounted prices of
their most common health care procedures in a public area, or on
their website. She declared that it was the intent of the
sponsor to require health care providers to disclose their
costs, but not make it burdensome to provide this information.
She relayed that this was important, as when consumers had this
information, it would give them the power to choose their health
care options. It would also open more conversations regarding
high health care costs in Alaska and consumer control for the
health care market.
3:16:01 PM
MS. NISBETT directed attention to the Sectional Analysis
[Included in members' packets] and explained that Section 1 was
expanded to authorize the Department of Health and Social
Services (DHSS) to collect health services and price
information. She stated that Section 2 was "really the meat of
the bill," it was a new section which said that health care
providers and facilities would compile a list of the most common
procedures along with the undiscounted price. This list would
be compiled once each year, and be posted in a public area or on
the provider's website, as well as provided to DHSS for posting
on the departmental website. She added that failure to provide
these costs could result in a fine, which shall not exceed
$2500. She reported that the effective date for the proposed
bill would be January 1, 2018.
3:17:50 PM
REPRESENTATIVE SULLIVAN-LEONARD asked for an explanation to the
zero fiscal note, as there would be increased labor costs for
maintenance of the DHSS data base and the levying of any fines
for failure to comply.
MS. NISBETT replied that the zero fiscal note was from DHSS.
CHAIR SPOHNHOLZ explained that the proposed bill did not require
a data base, as the information would merely be uploaded to the
department's website. She added that DHS had stated that this
could be absorbed into the regular work load.
REPRESENTATIVE JOHNSTON asked if there was a subjective nature
to the 25 procedures required to be listed.
CHAIR SPOHNHOLZ replied that the decision to require listing of
25 procedures for individual practitioners and 50 procedures for
hospitals was to keep the requirement from becoming too onerous.
She opined that this was a practical number for the most
frequently offered services, although this number was flexible.
REPRESENTATIVE JOHNSTON asked if each facility would decide
which of these procedures were the most frequent.
REPRESENTATIVE SULLIVAN-LEONARD asked for further testimony
regarding the fiscal note from DHSS.
3:20:49 PM
JILL LEWIS, Deputy Director - Juneau, Central Office, Division
of Public Health, Department of Health and Social Services,
explained that the determination for implementation was simple,
that DHSS would accept PDF versions of the cost lists and these
would be posted as-is to the website, most likely
alphabetically. She declared that DHSS did not anticipate much
enforcement, as they expected a good participation rate.
3:22:13 PM
REPRESENTATIVE SADDLER questioned whether the state should be
involved in these private transactions. He asked what
information was to be disclosed, stored, and promulgated. He
asked if the listing would reflect the price for someone
"walking the streets."
MS. NISBETT replied that the definition for price in the
proposed bill would be for the undiscounted price, before any
negotiations. She called this "the charged master price" that
each facility and provider set for themselves.
REPRESENTATIVE SPOHNHOLZ, in response to Representative Saddler,
pointed out that government should enter into this to protect
consumers, as the market itself had not done this.
3:23:56 PM
REPRESENTATIVE CLAMAN asked why it was only the undiscounted
price, and not the other prices which were published.
MS. NISBETT replied that this was an attempt to keep the bill as
simple as possible, and that this price could be used as a
reference point.
REPRESENTATIVE CLAMAN asked if there were any limits, such as
confidentiality with insurance companies, which would prohibit
the disclosure of prices.
MS. NISBETT said that, although it would be in the best interest
to include the insurance costs, the bill would focus on the
undiscounted price to allow consumers to make a decision.
REPRESENTATIVE SADDLER asked how the pricing currently worked.
MS. NISBETT replied that the intent of the sponsor was for the
consumer to have this price information prior to entering a
clinic to receive services.
REPRESENTATIVE SADDLER acknowledged that most consumers would
like to have the cost information, although he questioned
whether there was other information which made it difficult to
attain a fair price.
REPRESENTATIVE SPOHNHOLZ acknowledged that there was a challenge
for health care pricing as there was not a clear agreement for
what was a fair price. As there was a wide range for what was
actually paid, she had opted for simplicity and asked for the
undiscounted price as there were so many different variations.
She stated that there needed to be a pricing starting point.
She relayed that the proposed bill stated that the information
would be posted in a public place in the doctor's office, as
well as on the website, and on the Department of Health and
Social Services' website. She stated that there was not one
price that everyone paid, and although an all payers price list
had been suggested, it had been ruled untenable due to the cost.
REPRESENTATIVE SULLIVAN-LEONARD asked if, as the prices were to
be posted, this would open the door for patients to ask for
discounts on particular procedures.
MS. NISBETT said "yes."
3:30:59 PM
BECKY HULTBERG, President/CEO, Alaska State Hospital and Nursing
Home Association, stated that this was an important issue, and
that it had been raised frequently in the past few months. She
expressed appreciation for the simplicity of the proposed bill
and its goal for avoiding additional administrative costs. She
stated support for the concept of price transparency and
consumer engagement in health care decision making. She relayed
that the structure of the health care payment and delivery
system was complicated, which made price transparency difficult
to implement, even when all the parties agreed on the
desirability. She declared that it was important to have
realistic expectations for the accomplishments from price
transparency. She pointed out that economic theory and reality
supported the idea that most consumers were only price sensitive
and engaged in price shopping up to the point of out-of-pocket
exposure. She declared that low deductibles and low out-of-
pocket maximums meant that most customers would not be concerned
with price transparency. She reported that most public health
care plans in Alaska were maintaining relatively low deductibles
and out-of-pocket maximums, while private sector plans were
moving toward higher deductibles. She pointed out that it was
often the insurer with access to the best data. She suggested
that successful transparency initiatives sometimes also included
an insurance component, which she encouraged as an addition to
the proposed legislation. She reported that some of the larger
insurers in Alaska already offered price transparency tools.
She stated that undiscounted prices were a reference point, as
most consumers were not paying this price. She reported that
insurers paid rates based on contractually negotiated discounts,
and self-pay and charity care discounts were also often offered
to patients without health insurance. She recommended to delete
the words "charged to an individual recipient" from the language
of the proposed bill. She noted that the proposed bill required
that the list be compiled by procedure and diagnostic code. She
explained that diagnostic codes were very specific, there could
be many different codes for a procedure, and she suggested to
instead just use the procedure code which she opined should
accomplish the objective. She suggested that, as DHSS was
required to post the pricing information on its centralized
website, it would be duplicative for individual providers to
also post this information, and she recommended removal of this
requirement for providers. She asked that the sponsor consider
a change of the requirement for posting the price list, to just
make the list available. She offered her belief that this could
stimulate conversation for the consumer cost. She stated that
health care price transparency was a very complex topic, and she
expressed her appreciation for the discussion.
3:36:05 PM
REPRESENTATIVE TARR asked whether there were efforts in any
other states and if these suggestions were in line with those.
MS. HULTBERG replied that states had different frameworks. She
added that the all payer claims data base was the gold standard,
albeit the most expensive option. She allowed that some states
had chosen an approach similar to the proposed bill, whereas
some states had mandated that providers offer individualized
estimates. She declared that this proposed bill was a
foundation and a step to elevate the attention and improve the
provision for pricing information.
MS. HULTBERG, in response to Representative Tarr, said that
generating a conversation between [the patient] and the provider
was optimal. She mused that having the price list available,
but not posted, would generate a conversation. She acknowledged
that there was not a perfect solution to this "Gordian knot of a
problem."
REPRESENTATIVE SADDLER asked about the current transparency for
health care costs in Alaska.
MS. HULTBERG said that this depended on the provider. She
stated that hospital prices were very difficult to understand,
as there were layers of discounts, deductibles, and out-of-
pocket costs. She reported that the hospitals were insuring
that staff were available to help navigate the system and find
out the prices. She acknowledged that, although it was possible
to find the price, it was also difficult. She offered her
belief that the challenge was to make it less difficult given
the structure of the system.
REPRESENTATIVE SADDLER asked if price transparency was
beneficial or detrimental to the hospitals and nursing homes.
MS. HULTBERG expressed agreement that price transparency was
optimal, more information was better for the system and for the
consumer. She questioned how to do this, given how the health
system had evolved for the past 40 years, without adding cost
and still helping the consumer. She stated that there was not a
philosophical difference regarding the good of transparency, but
the difficulty was in how to do it.
REPRESENTATIVE CLAMAN asked if the discounted insurance rates
were published in all states, and if it was possible for these
proprietary rates to also be published.
MS. HULTBERG said she would have to ask about this feasibility.
She shared that many insurers and large employers had tools to
help find the prices and find the most cost effective option in
each area. She agreed that, as not everyone offered these
tools, there was some value in posting prices as a reference
point for those patients without insurance.
REPRESENTATIVE EASTMAN expressed his agreement with the
philosophy, and asked whether the proposed bill captured a good
process for transition or could be improved.
MS. HULTBERG offered her belief that "the beauty in this bill is
the simplicity. I do not think this would be a difficult bill
for us to administer." She stated that she did not have
concerns, at this point, for the transition.
REPRESENTATIVE SADDLER mentioned capital and operating expenses
as elements of pricing, and asked what other elements of health
care services could affect any change in pricing if the proposed
bill was passed.
MS. HULTBERG suggested that a PhD in health care economics was
helpful in pricing. She stated that it was too early to tell
about the price transparency initiatives and whether they would
lower costs.
REPRESENTATIVE JOHNSTON asked about a national site for health
care costs, and the possible use of its data.
MS. HULTBERG replied that there was a national move toward price
transparency. She shared that, as the undiscounted charges were
not what most people paid, it was important for the insurer to
be able to determine the actual out-of-pocket expense. She
emphasized the need for the patient to call the insurer and the
provider to verify the procedures, the co-pay, the out-of-pocket
costs, and whether the provider was in-network.
3:46:33 PM
JOHN ZASADA, Policy Integration Director, Alaska Primary Care
Association (APCA), explained that APCA was the association of
community health centers in Alaska and was required, by law, to
accept patients regardless of ability to pay. He explained that
there was a sliding scale discount based on income. He declared
support for increased price transparency and added that patients
were engaged and educated on the ways to use the care options
and coverage available. He reported that Alaska health centers
mostly provided patients with an estimate of charges for
particular procedures, upon request, and that a large number of
the health centers had expressed an ability to compile and post
a list of prices for the most common procedures, as outlined in
the proposed bill. He expressed concern for effective
explanation regarding the discounts on the sliding scale, so
patients understood what they had to pay. He said that
federally qualified health centers had a unique bundled payment
system, and that the rack rate was often higher than what would
be posted with a private primary care provider. He shared the
concern by health centers that the requirement to post prices on
the health center websites may have an unintended consequence to
serve as a barrier for coming to seek care, especially for low
and moderate income patients and people for whom English was a
second language, as the sliding scale discount was often
presented at the time of appointment. He suggested that posting
the price list at the facility, along with support to better
understand the actual cost to the individual, might be more
effective for ensuring maximum access to care.
3:49:53 PM
REPRESENTATIVE CLAMAN asked about making available the listings
for the negotiated prices.
MR. ZASADA explained that 80 percent of the patients at
community health centers in Alaska were at 80 percent of poverty
or below, and that about 33 percent had commercial insurance,
with another 33 percent being uninsured. He stated that the
sliding scale discount was the primary way to reduce the cost
from the main rack rate. He stated that eligibility staff at
the health centers worked with the patients to provide the
price, so that patients knew the cost.
REPRESENTATIVE SADDLER asked if the transparency of prices would
affect the services of community health centers in Alaska.
MR. ZASADA noted that sharing rack rates on a website could
serve as a barrier to care for those people without health
insurance literacy. He expressed concern for potential patients
not seeking primary and preventative care based on a rack rate.
Other than this, he offered his belief that the proposed bill
would not dramatically affect the care offered.
REPRESENTATIVE SADDLER asked for a definition of rack rate.
MR. ZASADA said that the bundled rate from a community health
center included the presentation of the issue by the patient,
the examination, the procedure, the care coordination and other
factors which were built in by the health center.
REPRESENTATIVE EASTMAN asked if this legislation would allow
disclaimers for price discounts.
MR. ZASADA offered his belief that many health centers would
prefer personal interaction with a patient for those
discussions, as understanding for a sliding scale discount
system was not easily understood via a website. He declared
that it was much easier and clearer in person, especially for
those with limited health insurance literacy.
REPRESENTATIVE EASTMAN asked if the legislation would allow
this.
MR. ZASADA stated that the APCA would prefer not to post the
prices on the website.
REPRESENTATIVE SPOHNHOLZ asked if anyone paid the rack rate.
MR. ZASADA said that there were some uninsured patients with
incomes over 200 percent [of the poverty rate] who were subject
to the full price. He shared that there were also discounts for
early payment. He acknowledged that some people were subject to
the full price.
MS. HULTBERG, in response to the aforementioned question from
Representative Spohnholz, said that she would follow up with
this information.
REPRESENTATIVE SPOHNHOLZ asked why some people would not pay the
full price.
MS. HULTBERG replied that Alaska State Hospital and Nursing Home
Association also used sliding scales and self-pay discounts.
3:56:53 PM
REPRESENTATIVE SPOHNHOLZ said that HB 123 would be held over.
3:57:15 PM
The committee took an at-ease from 3:57 p.m. to 4:00 p.m.
HB 43-NEW DRUGS FOR THE TERMINALLY ILL
4:00:30 PM
CHAIR SPOHNHOLZ announced that the next order of business would
be HOUSE BILL NO. 43, "An Act relating to prescribing,
dispensing, and administering an investigational drug,
biological product, or device by physicians for patients who are
terminally ill; providing immunity related to manufacturing,
distributing, or providing investigational drugs, biological
products, or devices; and relating to licensed health care
facility requirements."
4:00:49 PM
BROOKE IVY, Staff, Representative Jason Grenn, Alaska State
Legislature, stated that this legislation essentially allowed
terminally ill patients to work with their doctors and drug or
device manufacturers to access investigational treatments that
had passed the safety testing phase, Phase 1 of the FDA (U.S.
Food and Drug Administration) approval process, but had not yet
passed Phase 2 and Phase 3 and were currently in ongoing trials,
hence were not yet widely available for public access. She said
that this could expand access to potentially lifesaving
treatments years before normal access. She stated that, as
fewer than 3 percent of those patients diagnosed as terminally
ill who tried to access clinical trials were accepted based on
the level of illness, this legislation would affect the other 97
percent. She added that a compassionate use program already
existed with the FDA, which allowed for application by the
doctor, although it was known to be a lengthy process which did
not work well for those people with terminal illness.
4:02:26 PM
REPRESENTATIVE SADDLER stated that mediation was already
required between a health care provider and a patient which
allowed for a process of testing and validation of drugs which
the provider suggested. He asked if this was an argument for no
remediation in order to allow a patient to try whatever
substance they thought would help save their life or improve
their health.
MS. IVY replied that the actual language of the proposed bill
defined a very specific situation for someone to have the
ability to access this. She reiterated that currently there was
a compassionate use application through the FDA, although it was
strictly for individuals diagnosed as terminally ill, which
required conference with their doctor, and then involved a
lengthy FDA process and institutional review board. The
proposed bill would maintain that the diagnosis was for
terminally ill and that the patient had exhausted all other
approved options, in consultation with the doctor, and would
then require consent of the doctor, the patient, and the drug
manufacturer for access to those medications.
REPRESENTATIVE CLAMAN asked why this was limited to terminally
ill patients, if someone was willing to try the experimental
options.
MS. IVY said that this question had come up previously and had
been discussed in other states. She reported that similar
legislation had passed in 33 states, and that this narrow focus
was more likely to be supported in the courts. She stated that
otherwise, this was, in essence, opening up the FDA drug
approval process and created a larger policy conversation than
the proposed bill wanted to tackle. She added that the proposed
bill focused on individuals with limited time, as they had been
diagnosed as terminally ill.
REPRESENTATIVE EASTMAN acknowledged the conservative approach
for the proposed bill, although he offered his belief that
politics was driving the question of who gets care. He
suggested that many Alaskans, although not expecting to die,
could benefit from an experimental treatment and "may very well
die even though they weren't expecting to." He declared that he
"would certainly want to see what we could do for those folks,
as well." He suggested that a more pro-active approach could be
better, offering as an example Alaska's leadership for the
legalization of marijuana.
4:07:44 PM
CHAIR SPOHNHOLZ opened public testimony.
4:08:22 PM
KEN LANDFIELD stated his support of HB 43, and questioned why
this was even an issue. He said that any argument for creating
a sense of false hope was not a valid argument, as "hope is hope
and terminal is terminal." He declared that the compassionate
use program was clearly not sufficient, otherwise, 60 percent of
the state legislatures would not have enacted a bill similar to
HB 43. He emphasized that time was "absolutely of the essence."
He offered his support for the proposed bill "because, quite
frankly, I can't think of any reason why you wouldn't."
4:09:38 PM
ELIZABETH KROME, Nurse, shared that she had been a nurse for 38
years, working in multiple areas, and that she had learned that
the removal of hope for a terminal condition was "the worst
thing in the world that can happen." She offered her belief
that everyone with a diagnosis for a terminal condition needs
hope and that individuals need the option to try different
treatments. She acknowledged the FDA experimental and
investigational programs and clinical trials, but she added that
they had very rigorous criteria. She stated her support for the
proposed bill. She explained that the patient would have many
roadblocks, which included the need for a physician to support
them, to locate the drug, and to find an insurance company which
would pay for treatment rather than deny coverage.
4:12:58 PM
MIKE MAHARREY, National Communications Director, Tenth Amendment
Center, reported that the Tenth Amendment Center had been in
support of this "Right to Try" legislation across the United
States, calling it the "no-brainer issue" because it was
difficult to oppose. He reiterated that similar legislation had
passed in 33 states. He stated that laws and regulations were
supposed to protect the people, but, by their nature, regulatory
schemes also created bureaucracy and red tape which could cause
harm. He reported that HB 43 did not begin to address "the
black hole between end of clinical trials and the final approval
of the treatment. This process can take up to 10 months, and it
often leaves patients in limbo." He offered an example of the
benefits to patients from the passage of a similar "Right to
Try" bill in Texas. He added that the Texas legislature was
considering expansion of this bill to include chronically ill
patients. He stated that this legislation illustrated the
"beauty of our federated structure. The American system was
never intended to run based on one size fits all solution
imposed from Washington, DC." He spoke about the dangers of
monopoly government. He declared that "Right to Try" laws were
an example of states using their rights to authority to exercise
control over local issues. He stated support of the proposed
bill.
4:15:54 PM
JASON NORRIS offered an example of his father's demise from ALS,
pointing out that it affected the body, but not the mind. He
recounted an article in the Washington Post about a man who had
fought ALS using advanced therapies, which had led to his own
awareness of the "Right to Try" movement. He implored passage
of the proposed bill.
4:19:39 PM
MS. IVY, in response to an earlier question from Representative
Tarr, offered her understanding that federal legislation allowed
for a quicker path for breakthrough medical devices and had
directed the FDA to evaluate the use of real world evidence,
observational studies, patient input, other research, and
clinical trial data in order to approve drugs for other
indications, and not simply for their initial studied use. She
said that this did not directly impact the compassionate use
program, however. She said that there was now a requirement for
drug companies to publish on their websites their policies on
how to access investigational drugs, which should make it easier
to find out how to access these drugs.
4:21:53 PM
MS. IVY clarified her earlier response to Representative Kito,
and shared the four main points made by the Governor of Hawaii
in his veto of similar legislation. These four main points
included that the compassionate use program already provided
access to investigational drugs, although the bill sponsor had
pointed out that there was a delay through this process, which
had resulted in the "Right to Try" legislation. The second
point made by the Governor of Hawaii was that the bill could
potentially interfere with the overall FDA system, and could
result in the unintended consequence of delay for the
development of potentially lifesaving drugs. She pointed out
that the proposed bill did not compete with clinical trials.
She relayed that the third point made by the governor was that
it violated the supremacy clause, which had been discussed
repeatedly during similar legislation debate in the many states,
and had been declared a "floor not a ceiling." She stated that
the final point from the governor had been that he was unclear
what the actual benefits from the "Right to Try" could offer
patients. She added that both the Hawaiian house and senate had
unanimously passed this legislation.
4:23:46 PM
MS. IVY addressed an earlier question from Chair Spohnholz about
the definition for terminal illness. She stated that it
appeared the definition used in the proposed bill came from
Louisiana and Colorado legislation, and had since been used in
"Right to Try" legislation in multiple other states.
4:24:24 PM
MS. IVY referenced an earlier question from Representative
Johnston regarding BCG medication, which had been developed as a
vaccine for tuberculosis, although it was also being used to
treat bladder cancers and melanomas. She referenced an earlier
speaker from the Goldwater Institute, who had acknowledged that
once a drug had been approved by the FDA, then off label use was
permitted and legal. She offered her understanding that it was
also permitted for a physician to prescribe an investigational
drug which was in Phase 2 or Phase 3 for off label use.
4:25:33 PM
MS. IVY turned attention to an earlier question from Chair
Spohnholz whether informed consent, as referred to in the
proposed bill, could include a verbal conversation between the
doctor and the patient. She said that there was not any other
place in Alaska statute where informed consent was defined;
however, in the medical community and under medical ethics, it
was accepted and understood that informed consent was different
from consent in that the patient must understand. She said that
whatever the form of communication, if the procedure, the other
options, and the associated risks were fully understood, then
Legislative Legal Services agreed that the current definition
was broad enough.
4:27:00 PM
CHAIR SPOHNHOLZ said that HB 43 would be held over.
^Presentation: Key Coalition
Presentation: Key Coalition
4:27:39 PM
CHAIR SPOHNHOLZ announced that the final order of business would
be a presentation by the Key Coalition.
4:27:57 PM
The committee took a brief at ease.
4:29:07 PM
MILLIE RYAN, Chair, Key Coalition of Alaska, Executive Director,
REACH, Inc., said that REACH served about 350 individuals with
intellectual and developmental disabilities in Southeast Alaska,
and was one of the ten largest private employers in Southeast
Alaska. She reported that this was the 30th year for the Key
Coalition. She recited some of the earlier successes, which
included a Medicaid funded home and community based services
system, closure of the very costly Harborview Developmental
Center, and legislation for autism insurance reform which
allowed for services to begin earlier. She spoke about the
establishment of a durable medical equipment reuse program,
which, in Kansas, had seen a $3.15 return on each $1 invested in
the program. She reported that the regulations for this program
had been issued and the program would be running very soon. She
pointed to recent legislation which allowed families to save
money toward disability related expenses without losing Medicaid
or Social Security and those services necessary to continue to
live in the community. She lauded that this 30 year partnership
between Key Coalition and the State of Alaska had made effective
and efficient use of the limited resources which were available.
She pointed to the numerous cost savings recommendations which
the Key Coalition had submitted over the last several years.
4:31:48 PM
EMILY ENNIS, Executive Director, Fairbanks Resource Agency, Key
Coalition of Alaska, said that Alaska was recognized as being on
the leading edge of provider services for those with
disabilities. She expressed appreciation for the assistance,
support, and funding.
MS. ENNIS offered a definition of developmental disability,
reporting that this was a condition which occurred between birth
and 22 years of age. As it occurred in the developmental years
of a child, it had a significant impact on the areas of life
function: mobility, communication, and cognitive development,
and she noted that these support services were usually necessary
throughout the life of the person. She said that a goal of the
Key Campaign was to educate about the needs of these
individuals. She said that about 100 years ago before
statehood, until the early 1970s, there were not any services in
Alaska for individuals with disabling conditions. She noted
that individuals were transported to the Lower 48, an arduous
trip for someone with a disability, and separated from their
family and community and moved into an institutional setting.
She referenced these people as the "Lost Alaskans." She pointed
out that good services were now developed, but they depended on
good funding. She declared that the desire was for the
opportunities for a full life, regardless of any disability.
She said that Alaska had developed a full array of services over
the past 50 years, which included housing for adults, employment
services, and invaluable services for families. She pointed out
that 50 percent of parents of children with a significant
disability would divorce. She asked that the legislature work
toward a sound fiscal plan so that these services for people
with significant disabilities could lead a full, productive,
meaningful life in their communities. She pointed out that any
cuts in funding could lead to catastrophic impacts on
individuals and families.
4:38:00 PM
ADDISON TURNBOW shared a personal story of his sister, who was
born in 1999, with a complex series of disabilities. He shared
the initial difficulties and fears for his family, and then
detailed the services and the respite care that brought support
to his family. He acknowledged the difficulties for his family
over the past 18 years, but declared the thankfulness of his
family for all the support. He stated that this gift had lead
him to a career of service.
MS. RYAN spoke about Alaskans with intellectual and
developmental disabilities who were able to lead full and
meaningful lives in the community, as a result of these
services. She mused that the system was backward, as Medicaid
home and community based waivers were waivers to institutions,
and that a costly institution had to be provided if requested,
although this was not what most people wanted. She stated that
people should be able to request community based waivers, and
then, only if needed, would there be placement in an
institution. She emphasized that waivers were very important
for helping people become a part of "this rich community that we
all know and love." She reported that 41 percent of adults in
Alaska with intellectual and developmental disabilities were
either working, or working toward employment, whereas the
national average was about 28.6 percent. She declared that
Alaska had done a good job for helping people go to work. She
noted that many people lived with their family and friends, who
offered unpaid support.
4:44:58 PM
SHELLY VENDETTI VUCKOVICH shared the story of her granddaughter,
Claire Vendetti, who required constant care, and who had
benefited from waiver services. She reported that the home and
community based services had allowed Claire to stay home and
make progress on the journey toward independence. She offered
her belief that this help for Claire had allowed all of us to
become better people, as "we've become educated about others who
are different than us. We've gotten to experience the feeling
of doing something good for the right reason." She stated that
none of this would have been possible without the waiver
services.
4:51:09 PM
MS. RYAN said that, although services helped people gain skills
and enrich everyone's lives, there was a price. She declared
that home and community based services were extremely cost
effective programs. She referenced an earlier study which found
that elimination of the Medicaid waiver program and the personal
care assistance program would ultimately cost the State of
Alaska hundreds of millions of dollars, which did not include
the cost of building facilities to house people. She declared
that adults with disabilities wanted to be employed and able to
support themselves financially, and she cited research which
showed that waiver funded employment services resulted in more
job placements, higher wages, and more hours of work per week.
She suggested the use of technology to increase independence and
to reduce the need for hands-on staff support. She shared
information about a pilot program in Juneau, "Simply Home."
4:54:18 PM
ALLEN RAY, Simply Home, shared that Simply Home had partnered
with REACH and the Key Coalition, and they were working with
other state legislatures on solutions to utilize technology for
program savings. He declared that one technology did not fit
all but each solution could provide some savings.
REPRESENTATIVE SADDLER asked for examples of the enabling
technology.
MR. RAY replied that any support delivered without a provider
was the most cost effective. He reported on control of the
environment for work and living arrangements through use of
technological tools.
JASON RAY, Simply Home, shared that conversations after a
presentation had opened up possibilities for outcomes using
technology. He asked for the opportunity to show the technology
and how it could be utilized in Alaska to improve outcomes at
less cost.
MS. RYAN offered an example of the use of sensor technology for
a young boy to allow him to keep his independence.
REPRESENTATIVE EASTMAN asked how many Alaskans would be eligible
for services and the amount of funding necessary.
MS. RYAN offered her estimate that there were about 3,000
individuals receiving waiver services, with another 1,000
individuals who received some lower level grant services. She
said that the wait list had varied from the current 500 people
to about 1,200 people, although "the need does not go down."
She stated that technology allowed people to live longer. She
offered an estimate that 13,000 Alaskans had a developmental
disability, although some may not need comprehensive services
until they leave school. She allowed that "sometimes people
don't need a lot, they just need someone to check in with them,
make sure things are okay, and that their doing fine."
REPRESENTATIVE EASTMAN cautioned Ms. Ryan to not overstate the
case for the good things, as there will always be people that
could not be reached in the world of finite services. He said
that people do not have meaningless existences before they were
found, and, if services need to be pared back, those lives will
still have meaning.
REPRESENTATIVE TARR addressed the optional services through
Medicaid, which included physical therapy, occupational therapy,
respite care, and speech, hearing, and language disorder
services. She emphasized that these were not optional services
for Key Campaign members, these were basic necessary services.
MS. RYAN expressed her agreement, but pointed out that Medicaid
home and community based services were optional services. She
added that these were approached differently in every state.
CHAIR SPOHNHOLZ expressed a better understanding for Medicaid
waiver options which allow a reduction for the cost of services
and ensure that there were services which allowed people to stay
at home while typically costing substantially less than the in-
facility services "that were once the norm."
REPRESENTATIVE SADDLER asked if Alaska was currently in a
transitional period when there could be a service provider
industry here in Alaska where people could make a living
providing services.
CHAIR SPOHNHOLZ explained that this was an economy created by
supporting the workers who provided these services.
MS. RYAN expressed her agreement that this was "a bridging
period" although Alaska was not keeping up with a livable wage
for people offering this direct support.
5:07:31 PM
ADJOURNMENT
There being no further business before the committee, the House
Health and Social Services Standing Committee meeting was
adjourned at 5:07 p.m.
| Document Name | Date/Time | Subjects |
|---|---|---|
| HB043 ver D 2.22.17.PDF |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Sponsor Statement 2.22.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Sectional Analysis ver D 2.22.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - Clinical Trials in Alaska.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - FDA Drug Review Process 2.22.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - Goldwater Institute Fact Sheet 2.22.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - Goldwater Institute Patient Stories 2.22.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - Goldwater Institute Policy Report Summary 2.22.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - Legislative Map 2.22.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Fiscal Note DCCED--DCBPL 2.28.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB43 Supporting Document - Letters of Support 2.27.17.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB 43 Powerpoint Presentation.pdf |
HHSS 2/28/2017 3:00:00 PM HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - Letters of Support 3.2.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB043 Supporting Document - Goldwater Institute Policy Report.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/7/2017 3:00:00 PM |
HB 43 |
| HB0123 ver O 2.22.17.PDF |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| HB0123 Sponsor Statement 2.22.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| HB 123 Sectional Analysis 2.22.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| HB 123 Fiscal Note DHSS DPH 3.1.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| HB0123 Supporting Document-Article ADN-A Doctor's Quest to Remain Human Inside an Insane Medical System 2.22.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| HB0123 Supporting Document-AAMC Price Transparency in the News 2.22.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| HB0123 Supporting Document-American's For Progress-Price Transparency 2.22.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| HB0123 Supporting Document-Truven Health Analytics-Save $36 Billion in US Healthcare Spending Through Price Transparency 2.22.17.pdf |
HHSS 3/2/2017 3:00:00 PM HHSS 3/9/2017 3:00:00 PM |
HB 123 |
| Key Coalition Priorities 3.2.17.pdf |
HHSS 3/2/2017 3:00:00 PM |
Key Coalition |
| Key Campaign Legislative Priorities Presentation.pdf |
HHSS 3/2/2017 3:00:00 PM |
Key Campaign |