HB 65-MEDICAL ASSISTANCE:BREAST/CERVICAL CANCER CHAIR DYSON announced that the next order of business would be HOUSE BILL NO. 65, An Act relating to a new optional group of persons eligible for medical assistance who require treatment for breast or cervical cancer; and providing for an effective date." Number 2026 KAREN PERDUE, Commissioner, Office of the Commissioner, Department of Health & Social Services (DHSS), came forth and stated that in 1997, which is the last year [DHSS] has full data for, there were almost 300 women who were diagnosed with breast cancer in Alaska, and 41 people who died of breast cancer. 26 women were diagnosed with cervical cancer, and 4 of them died. She said early detection and screening has dramatically improved in Alaska and in the country, and early detection and early treatment can reduce morbidity and mortality - it reduces mortality by 30 percent. She said there has been a huge effort on the part of the health community to provide both screening for cervical cancer and mammography. She added that [DHSS] has also been working on that, and offers a breast and cervical [cancer] early detection screening program. The program, she said, has been gathering "steam" across the state and is fully funded by the federal government. Last year, about 15,000 low- income women were screened under that program. COMMISSIONER PERDUE remarked that this program is being used nationally. Women were being diagnosed with treatment and not having the ability to pay for treatment. Last year, Congress made available as an option to the states the ability to provide coverage for the treatment. She stated that last year the breast and cervical cancer screening program in Alaska uncovered about 39 breast cancers and 33 cervical cancers. It is likely that about 41 of those women would have been eligible, if this bill had been in place. The cost of this, she said, is being borne to a great degree by the federal government. If this bill were to pass, the cost is estimated to be about $175,000 in state general funds and $413,000 in federal funds. The coverage is only for the treatment phase of the program. She added that the basic philosophy is that many of these women are getting treatment, but that any day of delay once the cancer is diagnosed can be very concerning. COMMISSIONER PERDUE, in conclusion, addressed the concerns that have come up nationwide. She stated that some of the issues are "Why this disease?" and "Why this body part?" because there are many constituents that don't have health insurance for many diseases. She said her response would be that the system for people who have no health care insurance is imperfect. When there are opportunities to provide coverage for groups, it is a valid public policy choice to determine whether or not to invest in those coverages. She added that one of the problems with anyone who has this cancer is that it is not possible at that time to get private coverage, because at that point the person has a preexisting condition. REPRESENTATIVE COGHILL asked if this goes under the Children's Health Insurance Program. COMMISSIONER PERDUE answered no. REPRESENTATIVE COGHILL stated that it is mentioned [in the bill] that it is going to be under the same federal match rate as the Children's Health Insurance Program. COMMISSIONER PERDUE replied that he was correct, that it is an enhanced match rate. REPRESENTATIVE COGHILL asked what title it would be under. COMMISSIONER PERDUE answered that it is an optional group under Title 19. Number 2268 REPRESENTATIVE STEVENS asked what the results are for not having early detection. MARY DIVEN, Alaska Breast and Cervical Cancer Early Detection Program, Maternal, Child & Family Section, Division of Public Health, Department of Health & Social Services, answered that the later it is detected, the greater the chance for metastasis - for it to spread to other parts of the body. The death rate is much higher the later it is detected or if treatment is delayed once it is detected. CHAIR DYSON stated that he hears conflicting things from the medical services providers. One says it is a myth that people can't get care, and if a person has a serious illness and shows up at the emergency room at the hospital, he or she will get cared for. He said one of his constituents has cancer, and although she is $380,000 in debt, she has the treatment. He asked whether it is true in [Alaska] that if a person has a serious illness and shows up at the hospital, he or she will be treated. TAPE 01-46, SIDE B COMMISSIONER PERDUE answered that she thinks that is true. She said this would not solve the problem of lack of insurance for everyone who has cancer in the state. She stated that she thinks it would be good to address that question to women who have had the disease, and to hear how they have paid those bills or how they were going to struggle along in terms of what they could demand from the health care system if they did not have insurance. She added that she does not think the medical community in Alaska is insensitive, but the access issue is not totally solved by saying, "Let's let the private sector carry the burden." Number 2313 CHAIR DYSON remarked that as he understands it, [the insurance companies] charge "you and me" more in order to subsidize the indigent people who can't or don't pay. COMMISSIONER PERDUE responded that that is absolutely true. REPRESENTATIVE CISSNA stated that she doesn't disagree with the concern of encouraging people to be responsible, but on these sorts of things, when people may hesitate because of the matter of money, the public cost may go up. She said it does make a difference in terms of how fast people respond. REPRESENTATIVE COGHILL asked what the eligibility is. MS. DIVEN responded that the eligibility for the screening program is that women receive detection through this federal program and they have an income less than 250 percent of the poverty level. For the treatment program, the income requirement is the same. She said one of the eligibility criteria for the screening and the diagnosis program is that [the women] can have insurance, but if the deductible is too high, they are eligible. For the treatment portion, they would not be eligible under this Medicaid option because their health insurance would cover it. Therefore, she said, the treatment portion is only for people with no other insurance coverage. CHAIR DYSON asked what the annual figure is of 250 percent of the poverty level. Number 2197 COMMISSIONER PERDUE stated that she would suspect that a lot of the individual women are not 65, but somewhat older in age than 30, and probably many of them are single, because they don't have the ability to have insurance in the family. MS. DIVEN stated that for a family of one [the annual figure] is $26,000. CHAIR DYSON asked if there is any qualification in terms of their assets. MS. DIVEN answered no. She said one of the main public health goals is to get the early detection in order to reduce the long- term cost for treatment. REPRESENTATIVE COGHILL stated that federal funding is obviously going to be a large part of this, and he asked what the commitment to this is under this authorization. COMMISSIONER PERDUE responded that this is an option that's been created for the states under congressional law. She said she has never seen [such a law] repealed. REPRESENTATIVE COGHILL stated that his concern is that the federal government says to do this and the state ends up with that "ball in our lap." The other issue, he said, is continually adding health care issues. He added that if the federal government decides to change its mind, then this will be in statute and it will be the state's responsibility to pay it. He said he is always concerned about replacing the private insurance market with public insurance for services. Number 2080 COMMISSIONER PERDUE stated that with the issue of the private market, it is important to remember that this could be considered a preexisting condition and can be a barrier to getting insurance. She added that by the time this will be done, she imagines that about 20 states will have adopted this; therefore, it will be difficult for Congress to retreat from its commitment to the states. MS. DIVEN added that even though it was passed under the last president, President Bush and Tommy Thompson - the Secretary of Health & Human Services - are calling and congratulating each state that has passed this. She added that this was passed unanimously by the [U.S.] Senate. Number 2003 REPRESENTATIVE CISSNA stated that one of things [a woman] gets told by health care providers is that as a woman over a certain age, she is supposed to go in for her annual mammogram. Representative Cissna said most of the people she knows have taken that to heart. She asked Commissioner Perdue, in the process of working on this, if she has figured out what voluntary efforts there have been to comply with that recommendation, because 40 people seems like a small amount. She also asked if there really is a concern about people quitting their jobs because they want to get this for free but keep their "Cadillacs and palaces." COMMISSIONER PERDUE responded that one of the things about an asset test is that people can be very land-rich but cash-poor. She said if a person is making $26,000 a year, he or she probably is not able to make many payments on many things. Number 1833 BARBARA DuBOIS testified via teleconference on behalf of herself on HB 65. She stated that she is 51 years old, is uninsured, and was diagnosed with inflammatory breast cancer in December. She said she was diagnosed through the state screening program, and if she had not had this program, she would not have gotten early detection. She remarked that she was first diagnosed with a stage-four cancer, which is the worst a person can get, but because it was detected early and her treatment has been successful, she has been downgraded to a stage two. Unfortunately, she said, [the program] gave her the diagnosis, but did not provide the funds for treatment. She explained that women in her position have three options: they can go on state aid by quitting their jobs and having only $500 in possessions; they can seek substandard or no treatment, which could be fatal; or they can get the recommended treatment and accrue a lot of debt, which is what she chose to do. MS. DuBOIS stated that the medical bills she accrued before her surgery, which was a week ago, were upwards of $40,000. She said her cancer is aggressive and expensive. She has had chemotherapy for 12 weeks, has had a mastectomy, and has to go back for more chemotherapy and radiation. She added that more than likely she will file for bankruptcy. She said she chose to continue working because she didn't want the state to pay for her rent and her food. MS. DuBOIS remarked that a woman shouldn't be penalized for choosing to work and not choosing state aid. She said HB 65 can actually save the state money by allowing women to continue to work, not go on the state dole, and only receive the medical assistance. Number 1641 MARCIA HASTINGS, Women's Health Director, Young Women's Christian Association (YWCA), testified via teleconference. She stated that [the YWCA] has been providing outreach to medically underserved women in the greater Anchorage area since 1994. [The YWCA] has been referring women to screening through the Breast and Cervical Cancer Early Detection Program. Nationally, she said, [the YWCA] has a partnership with the federal government and the Centers for Disease Control [and Prevention] (CDC) to provide outreach services for these women. If [the YWCA] did not have the financial resources of the screening program, their community health educators would be finding women who are without financial resources; telling them the message of early detection and that they should have an annual mammogram, a clinical breast exam, a pelvic exam, and a pap smear test; and then saying "good luck" and walking away. She stated that because of the Breast and Cervical Cancer Early Detection Program, [the YWCA] has been able to refer [those women] and help them navigate the health care system to receive screening services at no cost. MS. HASTINGS stated that her intent in speaking today was to put a personal face on the problem of women refusing the screening services because they don't have resources to pay for the treatment. Beginning early on, she said, oftentimes women would say, "I don't want to know; I don't want to be screened because if I find something, I will have no way to pay for it." She added that in the last six years [the YWCA] has had 3,500 women who are actively enrolled in its program. In conclusion, she stated that fortunately there are many physicians and medical facilities that are helping women; however, this doesn't stop women from accruing bills. For example, she said a woman who was detected with breast cancer through the early detection program did everything that was required. Every time a bill came in the mail, she put it in a shopping bag because she was busy keeping herself alive. Nine months after her treatment, she came into Ms. Hastings' office with three trash bags full of bills. Number 1421 CARLA WILLIAMS testified via teleconference in support of HB 65. She stated: The first legislation was introduced in Congress [in] 1997 because back then, as we realize now, ... it borders on inhumane to tell a women that she has breast cancer through a free screening program and then essentially leaving [her] on her own to find treatment. The intention of the early detection program was to reduce breast and cervical cancer mortality in this country, but screening and diagnosis alone do not prevent cancer deaths. ... The U.S. Senate gave their unanimous vote to this federal legislation, and the House was 421 to 1. So there was a lot of support. ... Even last night on Channel 2 news the governor again expressed his concern about this bill - that it wasn't moving forward. His comments were that this is a "must have" legislation. Some previous discussion has been concerning the 250-percent-of-poverty funding level. I have submitted written testimony to this office today, which supports [that] the 250 percentage number is reasonable and necessary. The figures I've used in this cost analysis were moderate ... and in some cases actually fairly low. ... I went to a Senate presentation last week on Medicaid regarding this issue about not having any assets. I remember the Medicaid presenters saying that there is a trend away from making people bend down with regard to the recent actions added to the Medicaid program. Bending down ... is making sure that you don't have any money left before you go into this program. Number 1239 CAREN ROBINSON, Alaska Women's Lobby, came forth in support of HB 65. She stated that the Alaska Women's Lobby has a membership, men and women, of about 1,500 and a steering committee of about 15. She noted that all of the 12 steering committee members have lost a friend or family member to breast cancer, and two of the members are going through chemotherapy for breast cancer. JENNIFER RUDINGER, Executive Director, Alaska Civil Liberties Union [AKCLU] came forth and stated that [the AKCLU] supports HB 65 and urges the committee to move it out. CHAIR DYSON asked if adding a particular disease - in this case, cancer - to the list of things that are specifically cared for opens up the possibility for actions that once one cancer is treated, all cancers must be treated equally. MS. RUDINGER responded that on the flip side of that, historically there has been a lack of attention and research to women's health care issues. She said she doesn't know if this is opening a door. She added that there have been arguments that there is discrimination; for example, in health coverage for Viagra and not for contraception. CHAIR DYSON said [Alaska Superior Court] Judge Sen Tan's decision stated that if one service is provided in a particular medical area they all have to be provided. He asked if, based on the judge's decision, this would be in danger of that. MS. RUDINGER stated that she doesn't see that the two are directly analogous. Number 1050 CHAIR DYSON asked, referring to the judge's argument [in the funding case], whether services must continue to be provided, once they have ever been provided. MS. RUDINGER responded that the decision stated that appropriations are up to the legislature and that the legislature does not have to fund any health care. There is not a constitutional right to funding; however, once the legislature undertakes to do so, it cannot discriminate based on the exercise of a constitutional right. For example, because reproductive choice and reproductive freedom are given great privacy protection, they are not analogous to other health care issues that don't have the similar privacy issues associated with them. CHAIR DYSON remarked that one could argue that cervical cancer, as well as prostrate cancer, is getting close to reproductive services. MS. RUDINGER remarked that privacy affects the choice; there's no choice to get or to not get a disease. Number 0912 SHARON YERBICH testified via teleconference in support of HB 65. She stated that she is a [cancer] survivor and has four daughters, one of whom was screened by this program several years ago. She said that if at that time [her daughter] had been diagnosed there would have been no treatment and she would have been in a quandary. ROBIN SMITH testified via teleconference in support of HB 65. She stated that when there are federal matching funds, they should be taken advantage of. She remarked that it is also necessary to look at the impact [these cancers] have on families. COLLEEN MURPHY, M.D., Obstetrician-Gynecologist, testified via teleconference in support of HB 65. She said she is currently a participant in the CDC-sponsored Breast and Cervical Cancer Early Detection Program. She stated: I just want to tell you that this is real, this is very real. ... As the women actually access the screening services, we invariably will encounter the abnormalities that they are intended to detect. I cannot tell you how distressing it is for a woman to find out that she has a precancerous process and then not be able to afford the treatment. So, it makes absolutely no sense for us to initiate an evaluation process and not make the same eligibility criteria available for us to treat the patient fully. I want to mention that ... I have ... permission from a patient that I saw, age 23, a Miss Ada Lee (ph) from the Valley who is apparently a constituent to Lyda Green. She gave me authorization with her signature that says, "I authorize Dr. Colleen Murphy to use my name during testimony at the HES committee hearing on 4/19/01. It is OK for her to describe my medical condition and financial challenges." This is a 23-year-old woman who delivered a baby three months ago and is currently breastfeeding. She had a pap smear abnormality during pregnancy that is a [high-grade intraepithelial lesion]. Colposcopy, which is looking at the cervix, was performed approximately three weeks ago. The biopsy that was done by Dr. Sivaly (ph) shows that she has severe pre- cancer. If the patient is not treated in the next several months, she has a 70 percent likelihood of progressing to evasive cervical cancer. The discussion we had this morning revolved around how is she going to pay for further evaluation and treatment. I want to let you know that the doctors in Alaska face this every single day, where we see patients [who] have diagnosable diseases, treatable diseases - namely, breast and cervical cancer - and the patient simply can't afford the care and follow-up that needs to be done. I really want to encourage you to complete the process to close the loop. Currently we know cervical cancer, if people get adequate screening, ... is 90 percent preventable. ... It is not enough to get a pap smear; the pap smear is only a screening technique. We have to do colposcopy, and then we have to do treatment; and that treatment may involve the treatment of cervical cancer. Same thing with mammography. We know that if a women gets a mammogram on a recurring basis, the likelihood of her dying of breast cancer decreases by at least 30 to 40 percent. There is no point getting a mammogram if we can't provide the treatment. Number 0545 REPRESENTATIVE STEVENS referred to the fiscal note and stated that of the four grantees who provided the testing, 61 percent tested were Alaskan Native women who are not covered by this because they are covered by the Public Health Service. He asked if the 61 percent Native women are outside the facts and figures. COMMISSIONER PERDUE responded that the number she gave of the 300 women is for all women. NANCY WELLER, Manager, State, Federal and Tribal Unit, Division of Medical Assistance, Department of Health & Social Services, came forth and stated that she thinks the high percentage of Alaskan Native women is due to the fact that three of the four grantees are Alaska Native health organizations that have CDC grants. Anyone with credible coverage under the HIPAA (Health Insurance Portability and Accountability Act) definition would not be eligible for this option. That excludes people who have military medical care, Indian Health Service, and any kind of health insurance coverage. REPRESENTATIVE STEVENS asked if the 300 women in Alaska would include people who would not be covered under this. MS. WELLER said yes. Number 0411 REPRESENTATIVE COGHILL stated that he is nervous about adopting the [U.S. code] because he thinks it could change and therefore put [the legislature] under obligation. He asked if it would be difficult to put what [the legislature] would expect the 250 percent of poverty to be. MS. WELLER responded that in drafting the bill there was a lot of discussion about whether or not to reproduce all of the language from the federal law in the statute. She stated that if Representative Coghill wanted to put specific language that describes the [federal legislation] she could help with the parts that are critical. REPRESENTATIVE COGHILL stated that he thinks he would rather have that in statute and then reference this as an authority, rather than have it be encoded. He stated that he objects to the direction [the committee] is going, but he also understands that this is a highly sensitive issue. He stated that he would like to put sideboards on [the bill] that say exactly what the intent is. Number 0141 REPRESENTATIVE COGHILL made a motion to adopt conceptual Amendment 1, to only reference the U.S. code, which clearly describes what the qualifications are. MS. WELLER stated that individuals would be eligible if they have not attained age 65; have been screened for breast and cervical cancer under the CDC breast and cervical cancer early detection program established under Title XV of the Public Health Service Act, 42 U.S.C. 300k et seq; and need treatment for breast or cervical cancer; and are not otherwise covered under creditable coverage, as defined in section 2701(c) of the Public Health Service Act. CHAIR DYSON announced that there being no objection, conceptual Amendment 1 was adopted. Number 0010 REPRESENTATIVE CISSNA moved to report HB 65, as amended, out of committee with individual recommendations and the accompanying fiscal notes. TAPE 01-47, SIDE A REPRESENTATIVE COGHILL objected. REPRESENTATIVE KOHRING stated that he is going to vote no on the legislation, but it doesn't reflect his opposition to women who need care. He said this is mainly an issue of who should pay for the service: the taxpayer or private funding. He remarked that there are nonprofit [organizations] that could potentially help. REPRESENTATIVE COGHILL stated that he feels strongly about this; however, he removed his objection. REPRESENTATIVE KOHRING stated that he will remove his objection, but will reflect his concerns [when signing the bill]. CHAIR DYSON announced that there being no objection, CSHB 65(HES) moved out of the House Health, Education and Social Services Standing Committee.