Alliance Update, April 2022

Alliance Member Highlight

Note from the Editor: We plan to start featuring one Alliance member each month, who will write about an innovative program or strategy they are using. Read on for an article about an innovative program out of the University of Colorado to provide a clinic for people who experience heavy menstrual bleeding. If you have a program that you would like us to highlight, please email Joe at joe@hemoalliance.org.

Multidisciplinary Care in the Management of Heavy Menstrual Bleeding and Blood Disorders

Mission Statement:
The Spots and Dots Clinic aims to enhance the quality of life of individuals who experience heavy menstrual bleeding by providing access to specialty care, state of the art diagnostic testing, and evidenced-based clinical management throughout the lifespan while contributing to the science that guides this care.

Who we are:
Dr. Patricia Huguelet is board-certified obstetrician gynecologist with a focused practice designation in pediatric and adolescent gynecology. She completed medical school at Saint Louis University and residency at the University of Colorado. Since joining the faculty at the University of Colorado School of Medicine in 2008 and Children’s Hospital Colorado in 2010, she has focused her clinical and research interests in heavy menstrual bleeding and blood disorders, particularly in adolescents and young adults. She has been the primary gynecologist in our multidisciplinary clinic since 2014.

Dr. Genevieve Moyer is a board-certified hematologist/oncologist who completed medical school, internal medicine residency and chief residency at Saint Louis University. After completing hematology/oncology fellowship at the University of Colorado, she was awarded the Hemophilia and Thrombosis Research Society’s Clinical Fellowship award in rare bleeding disorders and used that opportunity to work with Dr. Patricia Huguelet to grow what was then the “young women’s bleeding clinic” into the Spots and Dots Clinic. Through her work with biological females with abnormal bleeding, she has cultivated both a clinical and academic interest in improving the diagnosis and treatment of this population.

Origins of the Young Women’s Bleeding Clinic
The Spots and Dots Clinic originated and is still primarily housed at the Hemophilia and Thrombosis Center at the University of Colorado School of Medicine and collaborates with Children’s Hospital Colorado and University of Colorado Health.

The clinic was first developed in 2013 by Dr. Michael Wang, Professor of Hematology, and Dr. Stephen Scott, Associate Professor of Gynecology. In response to their observations of the impact of heavy bleeding on their patient’s quality of life and the challenges inherent in managing patients across medical disciplines, they developed a once-monthly clinic where both specialists could evaluate patients in the same clinical setting. With the presence of both Hematology and Gynecology in the same office, they were able to develop comprehensive treatment plans and follow patients in a collaborative fashion. Through the Hemophilia and Thrombosis center, patients were also able to have access to other ancillary services including physical therapy, pharmacology, and specialized nursing care.

Clinic Growth and the Spots and Dots Clinic
The clinic now provides care under the expertise of Dr. Patricia Huguelet, Associate Professor of Gynecology and Dr. Genevieve Moyer, Assistant Professor of Hematology who both share an interest in caring for biological females with abnormal bleeding. Under their co-directorship, the clinic has adopted its new title of Spots and Dots and increased accessibility by provide weekly clinics in two clinic locations across the Denver Metro Area with options for telehealth to reach others across the Mountain States Region. Services have also expanded to provide access to behavioral health, social work, and genetics counseling. A series of quality improvement initiatives have led to streamlined protocols that allow for more efficient access to medical therapies including hormonal medications for menstrual suppression, both in-clinic and intra-operative IUD insertions, hemostatic agents including intravenous factor replacement therapy, iron infusions, and more.

The Patient Experience
Up to two-thirds of those who menstruate will experience heavy menstrual bleeding at some point in their life. Up to 30% of those with heavy menstrual bleeding have an inherited bleeding disorder. Many patients with heavy menstrual bleeding experience long delays in accessing appropriate menstrual suppression therapies and the appropriate testing needed to diagnose an inherited bleeding disorder if present. While historically the field of hemophilia has overlooked women’s health, in the last decade, medical providers have improved screening techniques for heavy menstrual bleeding and gynecology care is now recognized as a crucial aspect in the management of biological females with bleeding disorders.

Some statements from our Spots and Dots Clinic patients that demonstrate the impact of heavy menstrual bleeding on their life include: “Other doctors kept telling me my bleeding would get better but no matter what we tried they never did,” “I was so tired and so afraid of bleeding into my clothing that I quit dance after starting my period and now it is hard for me to concentrate at school,” “I just want to have a hysterectomy so I don’t have to deal with my periods, even if it means I can’t have my own children.”

The Spots and Dots Clinic acknowledges that the treatment of heavy menstrual bleeding requires care of the whole person and an appreciation for how symptoms impact daily life. The multidisciplinary nature of the Spots and Dots Clinic allows for a comprehensive evaluation of the interaction between the hormonal, anatomical, and hemostatic causes of abnormal bleeding. All patients are seen by a behavioral health expert to screen for depression and to address the secondary impacts of heavy menstrual bleeding. Patients also have access to physical therapy services and a genetic counselor when needed. This collaborative approach allows for a wholistic and personalized diagnosis and management plan. This approach has been shown to improve control of heavy menstrual bleeding which is associated with improvement in various domains of quality of life. Access to specialized bleeding disorder testing also improves diagnostic accuracy to best inform discussions with other potentially affected family members, future family planning, and planning for invasive procedures.

In order to increase patient access to the Spots and Dots Clinic, Dr. Huguelet and Dr. Moyer have reached out to other UC Health, Children’s Hospital Colorado, and Community providers to increase awareness of how to screen for heavy menstrual bleeding and inherited bleeding disorders and how to refer appropriate patients for evaluation. This has increased this population’s access to multidisciplinary specialty care in unprecedented ways that continues to fuel ongoing growth of the clinic.

In addition to its commitment to patient care, the Spots and Dots Clinic also provides patients with the opportunity to participate in clinical studies aimed at better understanding how to best diagnose and manage biological females with heavy menstrual bleeding. Both Dr. Huguelet and Dr. Moyer are actively involved in clinical research endeavors and hope that the work being done in this clinic will not only change the lives of the patients they directly care for, but will also lead to innovations that will improve the quality of lives of patients for generations to come.

Also in this Issue…

Notes from Joe
· Update on Alliance Strategic Planning

Legal Update
· The Do’s and Don’ts of Contract Pharmacies in 340B Discount Drug Program for HTCs

Washington Update
· Preparing for the End of the COVID-19 Public Health Emergency

Payer Update

Notes from the Community
· Announcing the Hemophilia Alliance Foundation 3rd Annual Innovation Grant