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Sen. LaTurner

Kansans for Life applauds the Kansas Senate Federal and State Affairs chair, Jacob LaTurner (R-Pittsburg), and members of the committee for advancing an amended version of SB 85, Simon’s Law, to the full Senate for consideration.
SB 85 (Substitute) requires that:

  • parents receive written and oral notification before any DNR is placed in their child’s medical file–which they have the right to refuse;
  • any patient or prospective patient has the right to review existent medical facility “futility” policies governing the supply or denial of resuscitation and life sustaining treatments.

The legislation is named after Simon Crosier, who had Trisomy 18, a chromosomal condition.  Simon died after he was denied resuscitation at just three months of life.

Infant Simon gazed at his mom, Sheryl Crosier

Later, the Crosiers discovered to their shock and horror, that a DNR (Do Not Resuscitate Order) had been placed in the infant’s medical file without his parents’ knowledge or consent.

Introduced late in the Kansas legislative session last year, Simon’s Law passed the Kansas Senate 33-7 but was too short on time to work through the House process. Mary Kay Culp, KFL Executive Director, said,

“Simon’s Law establishes a significant advance toward protecting medically fragile children from discrimination and secures the rights of all parents to be fully informed decision-makers when their child’s life is at stake.

Heart-breaking testimony supporting Simon’s Law has come not only from the Crosier extended family in Kansas, but from other families across the nation whose children were issued DNRs without full parental input. Pediatric specialists, national medical groups, and members of the disability rights community testified in support of Simon’s Law.

KFL thanks the Senate Federal and State Affairs Committee for their work and urges the full Senate to quickly take the matter up for consideration.

If approved by the Senate, Simon’s Law will go to the House for further consideration. House members already are enthusiastic about passage of Simon’s Law and have filed a companion bill, HB 2307, with 30 co-sponsors

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Heart stethPro-lifers across the nation have been reading our series of articles on the “Faces & Facts of Simon’s Law,” and are urging Kansas to protect children and empower parents by enacting this vital measure.

The state legislature returns to work Wednesday following a short recess. The Kansas Senate has already passed SB 437, Simon’s Law, by a notable bipartisan 37-3 vote last month. The bill will prevent minors from being denied life-sustaining treatment without parental permission and will require, upon request, disclosure of hospital policies on “futile care.”

Recently, four medical associations have published their strong support for Simon’s Law, see here. The following are some excerpts from their endorsements:

  • ACPEDSThe American College of Pediatricians informs that, “Once inconceivable, the practice of hospital staff placing a do not resuscitate (DNR) order on a child’s chart without the informed consent of the child’s parents or legal guardian is on the rise… increasingly predicated upon the ill-defined and subjective concept of ‘quality of life’ with one or more disabilities considered intolerable.”
  • AAPSThe Association of American Physicians & Surgeons writes, “care judged by some to be ‘futile’ is often life-saving, even if it does not restore full function… [When] there is a time when medical intervention provides no benefit, it is unethical and should be unlawful for a medical facility to determine that point unilaterally.”
  • NAPNThe National Association of Prolife Nurses asserts that parents have “a right to full disclosure and participation in the healthcare decisions of their disabled or severely ill children.”
  • The Kansas City (Kansas/Missouri) Guild of the Catholic Medical Association believes Simon’s Law “recognizes the right practice of medicine… the sacredness of life and the primary role Cath guildparents have in caring for a child. [F]acilities or practitioners cannot and should not determine that a patient’s life is no longer deserving of medical care.”

These medical group endorsements acknowledge that DNRs are very often being issued due to negative judgments about the kind of life the child will live—not upon a medical assessment of impending death. In shorthand, such judgments about ‘futility’ are qualitative, not physiological.

The families that submitted testimony for Simon’s Law recounted that too many medical personnel clearly viewed their child as a victim of disabilities, without a rewarding life–a view that the family vigorously disputed.

Neonatologist McCaffrey

Dr. McCaffrey

Neonatologist Martin McCaffrey regularly treats severely ill infants and counsels many families about Trisomy 18 and other related chromosomal conditions. He advises:

“ A medical team using its subjective prediction of future quality of life as criteria to make life and death decisions,and  forcing that determination is a tyrannical enforcement of prejudice towards children with disabilities.

The case which prompted Simon’s Law legislation is a prime example of such bias.

It is my sincere hope that Simon’s Law will pass. The only physicians and hospitals that would be impacted by this legislation are those employing unilateral [orders not to resuscitate].”

Knowledgeable medical groups and individuals agree that Simon’s Law is a necessary corrective measure.

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Krissy Krotzer

Krissy Krotzer

Simon’s Law insures that life-sustaining treatment (resuscitation, nutrition, medicine) will not be denied to minors without parental consent. This bill has already passed the Kansas Senate 37-3 and work on its passage in the House will continue when legislators return April 27.

The testimony for Simon’s Law in Kansas documented a consistent medical bias toward children with chromosomal disorders. Researchers and parents described how these children were denied scheduled surgeries after their genetic conditions were verified. Furthermore, they were denied treatment to save their lives after DNR (Do Not Resuscitate) orders were secretly placed on their medical charts.

The prevailing medical viewpoint on children with trisomy conditions is almost uniformly negative, essentially recommending provision of comfort care only. Kansas legislators learned that families of these children often had to fight for their child’s life both before birth, when being urged to abort, and after delivery, when physicians refused requested interventions.

Dr. Martin McCaffrey is a pro-life neonatologist with over 20 years in this arena. He supports Simon’s Law with this perspective: It is shocking that the neonatal community in the United States has reached a point where a significant number of providers feel it is justified to place a unilateral Do Not Resuscitate [or attempt resuscitation] order on a child’s chart, based on a neurologic prognosis which parents are perfectly willing to accept, but the medical team does not.”

Consider the stresses imposed by the medical community on the family of Kristina (Krissy) Krotzer. Her mother, Terre, writes:

“Our daughter Kristina was diagnosed prenatally with Trisomy 18. At the time they confirmed the diagnosis via amniocentesis they let us know that although we were at 22 weeks it would still be acceptable to “interrupt” the pregnancy, i.e., terminate, because the fetus was still smaller than a typical “20 week fetus” but we would need to decide quickly. We declined.

Later in our pregnancy we began preparing for our daughter’s birth. In our discussion with the doctors we were very clear that we would do whatever it took to get our daughter into this world alive. We didn’t know how much time we would get but it was important to us to give her life if at all possible.

The doctor refused to consider c-section as she said it was a non-viable pregnancy and even refused to monitor my daughter during labor because, and I quote, “I don’t want you to know if she dies or not.” 

This doctor was fired.

A new doctor agreed to the c-section if necessary. We scheduled a day to induce (at 39 weeks) so that this doctor would be guaranteed to be there as he was the only one we trusted to give our daughter a chance.

We were very clear that our birth plan was to get her into this world alive and from there decide –based on her actual overall health and medical needs– what to do each step of the way. Never could anyone have interpreted our desires to include a Do Not Resuscitate order.

Labor began and our baby’s heart rate dropped with each contraction. It was decided a C-section was necessary. Our daughter was born soon after. She presented with Apgar scores of 5 and 8 and needed only a small amount of “blow by” oxygen. We spent time together and she was taken to the intermediate care NICU for more evaluation and monitoring. She did fine, and we went home 5 days later with our tiny 3lb. 8oz. little girl.

Krissy 16th bday

Krissy’s 16th birthday

Today Krissy is 16 years old and a sophomore in high school. While she’s had a handful of medical issues, Kristina has done well.

Four years ago I was looking through the medical records from Kristina’s birth and found that– unbeknownst to us– the hospital had placed a DNR on Kristina prior to her birth.

This DNR was not our choice or decision and if I hadn’t looked back at the  records, we never would have known. To this day, every time Kristina is hospitalized we get challenged over the fact that we have her listed as a full  code.

We were once told by a physician, ‘you’ve had 10 good years with her, isn’t that enough?’

Krissy has a happy, healthy, full quality of life. When that changes, our decisions might change. But either way it should always be our choice.”

Terre Krotzer expresses the sentiment of many families who testified in support of Simon’s Law. Just imagine how you’d react to doctors who think your child has lived long enough. Imagine having to constantly fear that medical personnel might refuse to sustain the life of your child.

That’s the fear and apprehension that Simon’s Law will allay.

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Simon napping with his father, Scott Crosier

Scott Crosier napped with baby Simon

Recent posts have revealed the facts surrounding secretly placed “Do Not Resuscitate” (DNR) orders without parental notice or consent that resulted in the deaths of Simon Crosier and Megan Barnes. (see here and here)

Testimonies from both families, as well as detailed testimonies from other families and supportive physicians and researchers, were submitted to the Kansas Senate Public Health and Welfare committee urging enactment of ‘Simon’s Law.’ (see here)

By an overwhelming bipartisan vote of 37-3 on March 22, the Kansas Senate passed Simon’s Law to

  1. insure no DNR order can be issued to a minor without consent of parents/guardians, and
  2. require that a hospital/medical facility, upon patient request, disclose any ‘futility policies’ in place.

The House can take action on the bill when the Kansas legislature reconvenes April 27.

There was no opposition presented against Simon’s Law in committee. While not one medical group or facility testified at the Senate hearing, a stealth campaign to kill this bill is now being waged by lobbyists for various hospitals.

Their position is that Simon’s Law is unneeded (or even harmful!) and that reasoning was encapsulated in an unsigned March 29 editorial by the Topeka Capital Journal (TCJ), a prominent Kansas newspaper.

Neither proponents of the bill, nor Kansans for Life, were contacted by TCJ to explain the need for Simon’s Law within the current climate in which certain newborns, and children of other ages, are labeled “unworthy” of life-sustaining care.

BAD FACTS= BAD EDITORIAL
The TCJ editorial asserted that, currently, DNR “orders aren’t to be placed in a minor’s chart without full disclosure to the parent or guardian.” 

However– in fact– disclosure does NOT always occur, as the cases brought to the Senate Health committee illustrate. In these instances, later verified by researchers, children lost their lives and necessary medical services, because negative value judgments were made about the children with chromosomal abnormalities.

Furthermore, “disclosing” a DNR is just stating that a DNR is being imposed; it is not seeking permission.

The TCJ editorial tries to claim the high ground by asserting Simon’s Law could “inflict unnecessary suffering upon children.” And as the final kicker, the editorial scolds –in the identical manner pro-abortionists do– that legislators are “primarily untrained in the area of medicine” and “shouldn’t play God.”

Scott Crosier, the father of Simon Crosier, for whom the Simon’s Law legislation is named, rebutted the editorial in a letter published April 9. “Unfortunately, hospitals’ secretive futility policies DO give them the ability to place DNRs [on minors] without [parental] knowledge or consent despite the rhetoric presented.”

Simon’s dad painfully experienced what the TCJ editorial seems ignorant of: that denial of life-sustaining treatment is being applied based on value chromosome sloganjudgments, specifically by those “with medical training.”

FUTILITY JUDGMENT BASED ON OPINION
Mr. Crosier wrote, “For clarification, a futility policy allows a hospital and its physicians to make any decision regarding the treatment of a patient they deem to be futile without any input from the patient or family. Bottom line is, hospitals are making business decisions when the lives of our children are at stake. Our physician’s favorite statements when Simon was in the NICU were, ‘I don’t know,’ ‘Not for Simon,’ and ‘Incompatible with life.’  Cold harsh comments to hear regularly when you are pleading with them to do everything they can to help your son.”

Mr. Crosier fundamentally disagrees that legislators need any medical training to recognize the need for Simon’s Law:

If the hospitals are not going to be completely open and transparent concerning their policies, then we clearly need our government to step in and protect our rights as parents.”

TCJ did not include this last relevant paragraph from the letter they published from Simon’s dad: “The physicians and hospitals have government protections through many federal and state laws but for some reason Simon’s Law would be a burden for them to get written consent from a parent for a DNR? This makes NO SENSE! If you want to protect your child’s human rights and your parental rights, supporting ‘Simon’s Law’ really is a no-brainer.”

Anyone with even limited experience with being hospitalized knows that the facilities and doctors do indeed insist on signed permission, often multiple times in just one stay. The hospital lobbyists really have no credible excuse for not getting written parental permission, which is presumably why they never came to a public podium to testify about Simon’s Law.

Crosier’s unpublished paragraph completely undercuts the entire TCJ editorial. Is that why it was omitted?

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Megan Barnes, 1985-2004

Megan Barnes, 1985-2004

Simon’s Law, Kansas Senate Bill 437, would require parent permission before a minor is coded as a Do Not Resuscitate (DNR) and would also require hospitals and other medical facilities, upon request, to disclose any existent “futility” policies. (See more here.)

This is the latest in a series from Kansans for Life that looks at the real lives affected when Do Not Resuscitate (DNR) orders are unilaterally issued by physicians. In the following, Ann and Frank Barnes share the details of how this practice ended the life of their precious daughter, Megan.

“Both our beloved daughter, Megan, and Simon Crosier– for whom the Simon’s Law legislation is named– were born with the same rare syndrome but Megan’s diagnosis was not immediately detected.  She was full term but small, with a ventricular septal defect and a minor lip defect.   Such signs alerted doctors of possible chromosomal problems, so a blood sample was sent for genetic testing.  We were, however, able to bring her home at a week old.

Megan was over two months old when we heard the words “Trisomy 18” and the heartbreaking news that these babies fail to thrive and her life would be brief– up to a year at most.  When questioned as to what would cause her death, the response was a vague, “these babies don’t do well.” Hospice was suggested, but accepting Hospice care would be accepting the diagnosis which our hearts were not ready to do.

She was our daughter and loved, perhaps even more so, because of those predictions.

The fear of Megan dying weighed heavily on our hearts until we stopped waiting for her to die and began finding ways to help her. But in 1985 there was a lack of information about survivors living with this syndrome. We felt alone and longed to meet another child like Megan.

Her geneticist gave us a newsletter from the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) when she was about 6 months old.  What a life changer! SOFT became both a life-line of information and a second family, with children like our daughter.  SOFT also has a compassionate medical advisor who has helped families for over three decades.  Because of the tremendous sense of worth given to each child at the annual SOFT conferences, we attended many, and still do.

I cannot tell you the number of times we said how glad we were to have Megan.  She gave us purpose, and taught us about patience, perseverance, resilience, unconditional love, and more.  She had a sweet disposition and, like any child, enjoyed attention and praise.  Though she could not talk, she definitely let us know her preferences.  All-time favorites were the Disney video, Beauty and the Beast, a Texas Instrument toy– replaced more than once, and her 17th birthday party.  She enjoyed music and movement and the activity of physical therapy sessions.

Megan was content and knew she was loved, and it was obvious that what she valued most was being with people, especially those who loved her.

On Christmas Day, at age nineteen, Megan was hospitalized for virus-caused dehydration, in a pediatric intensive care unit at a major teaching hospital.

She died four days later.

We were devastated.

Only after her death did we request her hospitalization records and learned the horrible truth that our wishes for life support intervention had been overruled by a verbal order from the “attending” physician to his staff.   Megan had been issued a Do Not Resuscitate (DNR) order without our knowledge or consent. 

Had there been a requirement for a parent signature on a life support order in that hospital, this would not have happened.

It added so much more pain to our grief to learn that our daughter died because we trusted the wrong physician.  Instead of providing needed intervention, he misled us about what was happening, allowed her condition to decline, and then said there was nothing that could be done.

MEGAN’S LAST GIFT
Our daughter’s end-of-life lesson is about the vulnerability of parents and their children when the child is hospitalized. Parent-physician trust requires transparency and respect.

We believe any physician (hospital, medical society or hospital association) opposed to the parental signature requirement on a life support order, as proposed in Simon’s Law, has something to hide; and in some cases wants to control the outcome due to personal views about a particular disability or illness.

Megan outlived the survival statistics we were given when she was an infant, and she is not the only one with Trisomy 18 or Trisomy 13 to have done this as a number of survivors are now young adults!  They have health issues, developmental challenges and a life-limiting disorder, but most importantly, they are living evidence that it is incorrect to claim these disorders are universally lethal.

Clearly, the risk of a Do Not Resuscitate (DNR) code being imposed without parental knowledge or consent is increased for children like Megan and Simon. And this dire risk also applies for any child who suffers critical injury or illness.

We fully support Simon’s Law to help prevent this injustice from happening to another family.”

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baby SImon Crosier died to a secret DNR

Baby Simon died due to a secret DNR order

The Kansas Senate has approved two pro-life bills: SB 437, Simon’s Law, and SB 436, prioritizing public clinics for Title X money that Planned Parenthood had claimed in 2011 was “theirs.”

The Senate passed both bills provisionally Monday with a final vote tally for both scheduled for Tuesday.UPDATE, State Legislative website error corrected Tues. 7pm: Final tally: SB 437,Simon’ s Law, passed 37-3 and SB 436 passed 32-8.

Sen. Jacob LaTurner (R-Pittsburg) was bill carrier for Simon’s Law, adopted from a measure originally filed in Missouri. Simon’s Law would:

  • prevent children from being denied life-sustaining care through DNR (Do Not Resuscitate) orders issued without parental knowledge or permission; and
  • require hospitals and medical facilities with policies about withholding life-sustaining treatment to disclose such policies upon request.
Sen. LaTurner

Sen. LaTurner, pro-life bill carrier

“I think this is a very good piece of legislation, very necessary to make sure that this doesn’t happen to any children in the future in the state of Kansas,” LaTurner said, after detailing the in-hospital death of baby Simon Crosier, using the words of his mother, Sheryl Crosier.

Kansans for Life had presented a collection of tragic accounts of how medically-fragile children were harmed –or  had died!– due to “secret” DNRs.  See personal testimonies and blog posts, here and here.

Simon’s Law does not criminalize any actions of doctors or hospitals; it merely sets in law the same process already in state statute for guardians when life-sustaining care is threatened to be denied to their wards.

During Monday’s floor debate, consternation about the bill came only from pro-abortion regulars, Sen. Vicki Schmidt (R-Topeka) and Sen. Laura Kelly (D-Topeka) who are each married to Kansas physicians. (No current Kansas senators are physicians or nurses by profession.)

Sen. Schmidt opened her comments on the floor by asking if, under Simon’s Law, a child in an emergency room must be kept alive if he/she had arrived without a parent. The answer was, certainly, yes! And isn’t that what every parent should be able to assume will happen? Yet Sen. Schmidt found it troubling!

Sen. Schmidt

anti-life Sen. Vicki Schmidt

Schmidt also tried to raise fears that foster parents or the state family agency would be unworkable as petitioners. However. the protocol to petition the court on behalf of a child in need of treatment, applies smoothly for those “acting in the place of” parents. Thus was the sum of her objection to Simon’s Law

To explain why no entity opposed Simon’s Law, Sen. Kelly made a false claim that “the process for it was too rushed,” with only one day’s notice given for the March 3rd hearing –thus prohibiting all stakeholders from testifying. That was both absurd and provably false!

  1. There’s a myriad of medical interest lobbyists at the Capitol who learned on Feb 10 that Simon’s Law was in process and had plenty of time to prepare testimony.
  2. Moreover, KFL records show the Senate Health committee secretary specifically notified all committee members (including Kelly) and 50 other interested parties on Feb 23–not March 2 as Kelly claimed–about the Simon’s Law hearing.

HOSPITALS HIDING
Sen. Kelly said that Children’s Mercy Hospitals in Kansas City, MO and St. Louis. MO, as well as the SMS Missouri health network had opposed the Missouri version of Simon’s Law, and had discussed their concerns with her. However, the superficial medical opposition to the Missouri version has seemed to evaporate toward the Kansas version, perhaps due to clarifying definitions and conflict protocols from KFL not in the original Missouri version.

On the Senate floor, Health & Public Welfare chairman, Sen. Michael O’Donnell (R-Wichita), rebutted Sen. Kelly’s claims of “committee process abuse”and said none of her named entities–or any other party– has ever yet to contact him with concerns. Most observers realized Kelly’s claim of abuse of process was a weak attempt to excuse why she will be passing on tomorrow’s final vote.

The unique situation in which a Kansas pro-life bill has gone unchallenged in committee may actually reflect reluctance by physicians and hospitals to state openly:

  • their unwillingness to relinquish sole control over DNRs, as well as
  • prove that a pernicious medical elitism and bias exists toward patients they believe are not “worthy” of living.
Sen. Ostmeyer

pro-life Sen. Ostmeyer

Pro-life Sen. Ralph Ostmeyer (R-Grinnell) alluded to physicians who issue DNRs in order to “put parents (not the child) out of their misery.” Sen. Ostmeyer insisted parents deserve to make the final call, adding,”Don’t let the doctor play God.”

PLANNED PARENTHOOD FUNDING ATTEMPT
The second bill passed is SB 436, which targets Title X contracts to provide comprehensive care to the indigent.  (see KFL blogs here and here and KFL testimony)

Kansas’s right to prioritize full-service providers was upheld in 2014 by federal appellate court after Planned Parenthood sued the budget allotment —and lost.

In Kansas, federal Title X reproductive health funds go first to full-service facilities, mainly public health clinics, and then public hospitals. The Kansas legislature has annually budgeted for this since 2011 (after 4 years of pro-abortion governor vetoes).

The point of SB 436 is to make permanent in statute what has been an annual budget item. On behalf of her 26 Senate co-sponsors, Sen. Caryn Tyson (R-Parker) was the bill carrier.

As she had attempted in committee, abortion supporter, Sen. Marci Francisco (D-Lawrence) once again tried to amend SB 436 to create a new revenue stream for Planned Parenthood. The amendment failed.

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Senate committee chairmen O’Donnell & Masterson expedited pro-life bill hearings

Pro-life Senate chairmen,  O’Donnell & Masterson

Pro-life Senate Public Health & Welfare chair, Mike O’Donnell (R-Wichita) and Senate Ways & Means chair, Ty Masterson (R-Andover) expedited committee passage of 2 pro-life Kansas bills this week.

On Wednesday, March 9, the Senate Public Health & Welfare committee passed Simon’s Law, SB 437, a bill addressing parental rights and life-sustaining treatment for minors.

Only one committee member, Sen, Laura Kelly (D-Topeka), voted against passage. Sen. Kelly complained that medical opposition had NOT come forward to oppose this eminently reasonable and protective bill!

Simon’s Law was named for a baby, Simon Crosier, who was allowed to die due to a DNR (Do Not Resuscitate) medical order issued without knowledge or permission of his parents; they believe Simon was discriminated against due to his Trisomy 18 condition.

Simon Crosier & parents

Simon Crosier & parents

Kansans for Life brought the committee many compelling testimonials from other families whose medically fragile children were harmed and/or denied medical resuscitation– due to negative “quality of life” value judgments from physicians and hospitals. Simon’s Law will do two important things:

  1.  prevent any medical facility or practitioner from secretly placing a DNR order for children under 18 years of age without written consent of at least one parent or guardian.
  2. require that, upon request, a facility must disclose any existing written policy on denial of life-sustaining treatment.

The Senate Public Health & Welfare committee added clarifying language defining futile care and a process for DNR conflict resolution. The full Senate is expected to vote on Simon’s Law within days.

BILL THAT PLANNED PARENTHOOD HATES

Anti-life Senators Kelly & Francisco

Anti-life Senators Kelly & Francisco

On Tuesday, March 8, the Senate Ways & Means Committee passed out a pro-life bill that would make permanent the way the state health department, KDHE, assigns grants using Title X federal funding.

SB 436 codifies the original 2007 Huelskamp-Kinzer proviso, prioritizing comprehensive care facilities as Title X recipients. The proviso was annually passed– but line-item vetoed– until signed into law in 2011 under Gov. Sam Brownback.

Planned Parenthood sued in 2011 to get that Title X money which it no longer qualified for. The Tenth Circuit Court of Appeals denied their claim in 2014. The ruling vindicated Kansas, and what former KDHE secretary, Robert Moser, had maintained: “Title X was not intended to be an entitlement program for Planned Parenthood.

SB 436 prioritizes that full-service public clinics and hospitals are first in line for Title X reproductive-services money. Remaining money is secondarily prioritized to private, full-service clinics and hospitals. The measure strengthens local ‘safety net’ health clinics.

The Senate Ways & Means committee passed SB 436 with Senator Marci Francisco (D-Lawrence) as the only no vote. This bill is also expected to get a vote from the full Senate in short order.

During committee action, Sen. Francisco, with support from Sen. Laura Kelly (D-Topeka), had offered an amendment to SB 436 that would have created a brand new KDHE funding stream for Planned Parenthood! The committee soundly defeated that amendment.

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