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Urological Community

Statement From Societies For Pediatric Urology

Brooke Phillips, CWCMS
Editor | Shield HealthCare
05/15/19  3:30 PM PST
statement from society of pediatric urology

BEVERLY, Mass., April 24, 2019 | PRNewswire

Physicians Provide Clarity on Legislation Restricting Medical Options

Following several developments in various legislative proposals that would limit medical options for pediatric patients, the Societies for Pediatric Urology issued the following statement to provide information about the dangers associated with the legislation and clarify significant factual errors that have been widely repeated and reported.

The statement below may be attributed to Dr. Lane Palmer, the President of the Societies for Pediatric Urology:

“It is troubling that the most basic tenet in medicine of presenting medical options to families has become a political issue. Patients and their families should make medical decisions following consultation with physicians whose role it is to provide current information regarding the risks, and benefits, of all available options. However, proposed bills in several states aim to remove this right from parents/families. The discussions with physicians must include all factors for the health of the patient – including physical and emotional concerns (which was legislated against in California.)

For complex conditions, a multi-disciplinary approach is best with several doctors from different specialties, and other pertinent professionals assembled to provide this information and answer questions regarding the management options. Medical decisions are based on the best health outcome for the patient. Gender identity or sexual orientation are defined by the individual, not by any medical procedures they may need. The medical community is not advocating for or against the surgical option. However, making only one option available and withholding others is not in the best interest of the patient, especially in complex conditions. Physicians will always advocate for their responsibility to present all the relevant information, and never for a singular and limiting course of treatment – one size does not fit all.

The medical community has provided full cooperation in addressing the proposed bills. We have testified at hearings, presented research, and provided current medical literature. Many patients and parents have shared their stories too – providing real-life examples about how a ban, or even a legislated delay in surgery would have harmed their health. Physician and patient advocacy groups including the American Medical Association, the American Association for Clinical Urologists, American Urological Association, CARES Foundation, Pediatric Endocrine Society, and Societies for Pediatric Urology, and several state medical societies, among many others have warned against these proposals, specifically about the dangers of limiting management options and the overarching and widely inaccurate definitions of ‘intersex.’

Each of our patients is unique. The decision of what is ‘medically necessary’ is different for each patient. Proposals of a blanket ban on surgery would not only threaten the care of children with intersex conditions by denying access to surgery by erroneously deeming it ‘unnecessary,’ but it would even deny surgery to infants and children without intersex conditions who would be placed inadvertently under an overarching umbrella of legislative proposals. This latter group constitutes the vast majority of patients who would be affected by such bills.

We understand these issues are very personal to many and there are strong opinions. Yet, the vitriol and threats that many physicians and patient advocacy groups have received are troubling and, in most cases, based on myths and falsehoods that no matter how often repeated, will never make them true.

We appeal to all legislators, advocates, and stakeholders involved in this matter to keep an open mind. These decisions are difficult enough for families to make. We must maintain the sanctity of an honest physician-patient/family relationship where accurate and current information offers the best chances for patients and their families to make the decisions that are best for them. Limiting information and options and using such a broad definition is truly a disservice to everyone.

The right to provide parents all the possibilities, options, risks and consequences of healthcare decisions should be afforded to all – and never transformed into a political issue.”

The Societies for Pediatric Urology is a non-profit organization comprised of doctors and medical practitioners of whose main primary purpose is to promote pediatric urology, appropriate practice, education as well as patient choice between practitioners, pediatric patients, and their families, involved in the treatment of genitourinary disorders in children. The SPU works to advance the specialty by promoting open dialogue about pediatric urology and continuously striving to meet the needs of patients and members. The organization advocates for inclusion and diversity on all levels of practice for the benefit of patients and their families.

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