Legislature(2005 - 2006)CAPITOL 106


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Heard & Held
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HB 356-MINORS: MEDICAL CONSENT,INCL BONE MARROW                                                                               
3:09:15 PM                                                                                                                    
CHAIR WILSON announced that the  first order of business would be                                                               
HOUSE BILL NO.  356, "An Act relating to consent  for medical and                                                               
dental services, including bone marrow donation, for a minor."                                                                  
3:09:43 PM                                                                                                                    
AMY SALTZMAN,  Staff to Representative  Carl Gatto,  Alaska State                                                               
Legislature,  presented  HB  356 paraphrasing  from  the  sponsor                                                               
statement as follows [original punctuation provided]:                                                                           
        House Bill 356 allows a minor with doctoral and                                                                         
     parental consent to donate bone marrow.                                                                                    
     Bone  marrow   contains  stem   cells,  which   can  be                                                                    
     transplanted into  a person to restore  stem cells that                                                                    
     were  destroyed by  high doses  of chemotherapy  and/or                                                                    
     radiation. The  National Cancer Institute  reports that                                                                    
     bone  marrow transplants  are  most  commonly used  for                                                                    
     treating  persons with  leukemia or  lymphoma, and  may                                                                    
     also  be  used  to  treat childhood  brain  tumors  and                                                                    
     Eligibility to receive a bone  marrow donation is based                                                                    
     on  the tissue  compatibility with  that of  the donor.                                                                    
     Tissue  type  is  inherited,  thus  patients  are  most                                                                    
     likely  to  match  someone  of   their  same  race  and                                                                    
     ethnicity.  According  the  Alaska Blood  Bank  of  the                                                                    
     available  3.5  million   volunteers  on  the  National                                                                    
     Registry  only  1.3% could  be  possible  matches to  a                                                                    
     Native American.  With the  large Native  population in                                                                    
     Alaska it  is essential  that there  be an  increase in                                                                    
     the availability  of possible  matches for  bone marrow                                                                    
     The National Bone Marrow Donor  Program (NMDP) does not                                                                    
     allow for minors to  participate in testing determining                                                                    
     capability  for  bone  marrow donation.  The  reasoning                                                                    
     cited by the NMDP has  been that minors are not capable                                                                    
     to  consent to  the medical  procedures. The  reasoning                                                                    
     for this  limitation is  unclear. This  procedure would                                                                    
     only be  done for  a minor with  the proper  consent of                                                                    
     the parent, guardian, and physician.                                                                                       
     Current   medical    procedures   have    created   the                                                                    
     possibility  for  less painful  transplant  procedures.                                                                    
     Donating marrow  typically does not  create significant                                                                    
     problems for the  donor because only a  small amount of                                                                    
     marrow is needed. The body  replaces the lost marrow in                                                                    
     only a few weeks.                                                                                                          
     Allowing for  donations of bone marrow  by minors could                                                                    
     significantly  improve the  odds of  survival for  many                                                                    
     Alaskans.  This legislation  is imperative  if Alaskans                                                                    
     are to win the fight against leukemia or lymphoma.                                                                         
3:10:50 PM                                                                                                                    
REPRESENTATIVE GATTO  added that only  1 percent of  the registry                                                               
occupants are Native,  and thus within that 1 percent  is where a                                                               
match would be  for [Native Americans].  It's only  "a percent of                                                               
a  percent," he  said. Therefore,  the hope  is that  by allowing                                                               
young people to  donate, the number of  Native Americans eligible                                                               
to donate would be increased.                                                                                                   
3:11:24 PM                                                                                                                    
MS. SALTZMAN informed the committee  that there are two different                                                               
procedures used  to [donate and  transplant] bone marrow,  one of                                                               
which  is similar  to  blood  donation.   She  also informed  the                                                               
committee that if a match is  found, there is less than 5 percent                                                               
chance that the transplant won't work.                                                                                          
3:12:16 PM                                                                                                                    
REPRESENTATIVE CISSNA  inquired as  to the  statutory protections                                                               
for  a minor  with parental  and doctoral  consent, although  the                                                               
minor doesn't want to donate the bone marrow.                                                                                   
MS. SALTZMAN  noted that regardless  of age, there  is counseling                                                               
when there  is a bone  marrow donation.  Furthermore,  a donation                                                               
would  only  occur if  it's  in  the  best interest  of  everyone                                                               
involved.    In regard  to  specific  statutory protections,  Ms.                                                               
Saltzman offered to research that.                                                                                              
3:13:23 PM                                                                                                                    
CODY   RICE,  Staff   to  Representative   Gatto,  Alaska   State                                                               
Legislature, related his understanding  the minors aren't capable                                                               
of giving  consent and  thus [whether there  is protection  for a                                                               
minor] is a moot point.   He suggested that whether a minor could                                                               
give or refuse consent if  the parent gave consent would probably                                                               
require a legal opinion.                                                                                                        
3:13:55 PM                                                                                                                    
CHAIR WILSON,  drawing upon  her experience  as a  nurse, related                                                               
that  when a  child  doesn't want  an IV,  although  it's in  the                                                               
child's best interest, the IV is  given if the parents have given                                                               
3:14:09 PM                                                                                                                    
REPRESENTATIVE  CISSNA  opined  that   it's  different  when  the                                                               
donor's body part is being used  for someone else.  She mentioned                                                               
the possibility  of a  sibling constantly being  used as  a "body                                                               
bank"  for another  sibling, which  could  endanger the  donating                                                               
sibling's life.  She questioned  whether one child should be used                                                               
as a body bank for another.                                                                                                     
MR.  RICE  said  although  that is  a  legitimate  question,  the                                                               
question assumes that a doctor  would breach the Hippocratic Oath                                                               
that he/she  "shall do no  harm."  He agreed  with Representative                                                               
Cissna that giving an IV to  a child for his/her best interest is                                                               
different than to  force one to donate, which may  not be in that                                                               
[child's]  best   interest.    The  aforementioned   would  be  a                                                               
difficult ethical situation for a doctor.                                                                                       
3:15:29 PM                                                                                                                    
REPRESENTATIVE  CISSNA   requested  an  answer  to   her  earlier                                                               
question regarding whether there  are statutory protections for a                                                               
minor  who  doesn't  consent  to  providing  bone  marrow.    She                                                               
inquired as to what other states are doing.                                                                                     
REPRESENTATIVE GARDNER  said she shares  the same concerns.   She                                                               
then  inquired as  to  the  risk factors  involved  to the  donor                                                               
CHAIR WILSON requested  that the answers be provided  by the time                                                               
the legislation  reaches the House Judiciary  Standing Committee,                                                               
which is the next committee of referral for HB 356.                                                                             
REPRESENTATIVE  GARDNER suggested  that the  language may  not do                                                               
what  is being  requested  because the  services being  requested                                                               
aren't for the [donating] minor.                                                                                                
CHAIR  WILSON said  that, too,  would  be addressed  in the  next                                                               
committee of referral.                                                                                                          
3:17:34 PM                                                                                                                    
REPRESENTATIVE SEATON  highlighted a  Washington Post  article in                                                             
the  bill packet  that  relates that  the  National Marrow  Donor                                                               
Program (NMDP) opposed  legislation similar to HB 356  due to the                                                               
associated medical  risks.   He inquired  as to  the risks  for a                                                               
minor that are not associated with an adult donor.                                                                              
MS.  SALTZMAN  related  her understanding  that  bone  marrow  is                                                               
"ripe" at the age  of 16 and over.  The NMDP chose  the age of 18                                                               
because  that's  the  general  age  of  consent.    The  Maryland                                                               
legislation was left broad such  that when the physician consents                                                               
and it's  in the best  interest of the  donor and the  donee, the                                                               
minor can donate bone marrow.                                                                                                   
MR. RICE  interjected his belief [that  the Maryland legislation]                                                               
placed  the policy  call into  the hands  of those  most familiar                                                               
with the risk and the need, which is the physician.                                                                             
3:19:56 PM                                                                                                                    
MS. SALTZMAN, in further response  to Representative Seaton, said                                                               
that she  spoke with many  physicians who didn't relate  or imply                                                               
that [there are different risks for  those 16-18 years of age and                                                               
those older].  However, physicians  did say that every individual                                                               
is different  and that a  thorough background check  is completed                                                               
for the donor and the recipient.                                                                                                
3:21:41 PM                                                                                                                    
REPRESENTATIVE   GATTO   turned   attention   to   the   Maryland                                                               
legislation, which  specified that the bone  marrow donation must                                                               
be  in the  best  interest of  the  donee and  that  there is  no                                                               
substantial risk to  the donor.  The  language "substantial risk"                                                               
seems to clearly  identify that there is a risk,  but it seems to                                                               
be weighed  against the benefit.   Representative Gatto concluded                                                               
by opining  that he  couldn't imagine  any physician  taking bone                                                               
marrow from a child who didn't want the procedure.                                                                              
3:23:38 PM                                                                                                                    
REPRESENTATIVE CISSNA  posed a hypothetical situation  in which a                                                               
three-year-old  may be  the only  donor match  for his/her  five-                                                               
year-old  sibling.   In  such  a life  and  death situation  it's                                                               
difficult to make  decisions, and thus it's  important to address                                                               
matters before such a situation.   She expressed the need to hear                                                               
from physicians who have actually been involved in these cases.                                                                 
3:25:24 PM                                                                                                                    
REPRESENTATIVE GATTO mentioned  that the situation Representative                                                               
Cissna posed isn't the issue being addressed by HB 356.                                                                         
REPRESENTATIVE CISSNA  pointed out  that this  legislation merely                                                               
refers to a minor and doesn't specify any age.                                                                                  
3:25:46 PM                                                                                                                    
CHAIR  WILSON noted  that  one's  bone marrow  cells  need to  be                                                               
mature, and thus  [bone marrow donation] isn't  usually done with                                                               
younger  children.   She then  reminded the  committee that  bone                                                               
marrow could be mature for those age 16 and over.                                                                               
3:26:23 PM                                                                                                                    
REPRESENTATIVE CISSNA  pointed out that  HB 356 adds  bone marrow                                                               
donation to those  [medical services for which a  parent or legal                                                               
guardian  of a  minor  can give  consent].   Therefore,  [medical                                                               
services] could refer to any number of things.                                                                                  
MR. RICE said that wasn't the  intention of the sponsor, and thus                                                               
he suggested that  the sponsor would be amenable  to an amendment                                                               
to provide clarity.                                                                                                             
3:26:49 PM                                                                                                                    
REPRESENTATIVE GARDNER expressed the need  to know more about the                                                               
risk factors  to the donor  as well as  the issue with  regard to                                                               
the age [of a minor].   Representative Gardner said that she read                                                               
the  legislation such  that medical  services  could include  the                                                               
donation of a kidney.                                                                                                           
MR. RICE said he suspected that  if such isn't listed under [what                                                               
is considered to  be medical services], it would  be difficult to                                                               
prove that  it's acceptable to  do other procedures such  as give                                                               
consent for a minor to donate a kidney.                                                                                         
REPRESENTATIVE  GARDNER  commented  that she  didn't  believe  it                                                               
would be excluded.                                                                                                              
REPRESENTATIVE  CISSNA suggested  that a  legal opinion  would be                                                               
3:27:49 PM                                                                                                                    
REPRESENTATIVE  GATTO  suggested  that  these  matters  could  be                                                               
addressed after testimony is taken.                                                                                             
CHAIR WILSON announced that no one had signed up to testify.                                                                    
3:28:05 PM                                                                                                                    
REPRESENTATIVE SEATON  requested that the sponsor  check with the                                                               
NMDP with  regard to  the risks that  caused the  organization to                                                               
oppose lowering the donor's age to 16.                                                                                          
3:28:26 PM                                                                                                                    
CHAIR WILSON  pointed out that  the statute already  includes the                                                               
dental and  medical services and  covers a minor not  living with                                                               
the guardian.   Therefore, she said  that Representative Cissna's                                                               
concerns are already covered, although not for bone marrow.                                                                     
3:29:00 PM                                                                                                                    
REPRESENTATIVE  SEATON   pointed  out  that  the   statute  being                                                               
modified is for the minor  giving consent for his/her own medical                                                               
treatment,  if  he/she  isn't  with the  parent.    However,  the                                                               
[language  in HB  356] addresses  a parent  giving consent  for a                                                               
minor, which  seems to be in  the wrong [statute] and  thus needs                                                               
to be clarified.                                                                                                                
[HB 356 was held over.]                                                                                                         

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