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 neuroblastoma. 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 transplants. 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 permission. 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 child. 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 necessary. 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.]