“Throughout the CHOICE Project we heard from numerous women about their lack of access to the diagnosis and care they need as patients with bleeding disorders. Many women explained that doctors told them women can’t have hemophilia, or a bleeding disorder, and otherwise how providers were dismissive of their symptoms and pain.” — Wendy Owens, CHOICE Project Officer
That rather disturbing information Wendy gathered was the catalyst for HFA’s Blood Sisterhood program’s “Share Your Story” survey. Unfortunately, it was a consistent and unnerving refrain among the women who took the CHOICE survey: they were having difficulty being seen or receiving treatment for their bleeding disorder symptoms. Some women were even being denied care. This was reported by women utilizing Hemophilia Treatment Centers (HTCs) as well as women who sought medical care elsewhere.
This matter was naturally of great concern to HFA, particularly regarding HTCs. Starting in the fall of 2014, HFA reached out to the Health Resources and Services Administration (HRSA), to ask what requirements HTCs have to care for individuals diagnosed with a bleeding disorder. HRSA is an agency of the US Department of Health and Human Services, and the primary federal agency for improving access to health care1 and is responsible for the National Hemophilia Program and grant funding that supports HTCs.
HFA also wanted to clarify the needs of women and verify the CHOICE Project feedback. We launched the “Share Your Story” survey on the Blood Sisterhood pages of the HFA website on February 15, 2015. This short, 15-question survey provides women the opportunity to share their experiences in their own words about the care they have received in reaching diagnosis and treatment for their bleeding symptoms.
The following provides a summary of what we learned and what we have done with what we learned in the first six months of the survey collection.
HFA received 53 completed surveys from women in 26 states across the country. The average age of the women taking the survey was 40 years old, with the youngest being 14 and the oldest 70 years old.
Of the 53 women who completed the survey, five of them reported bleeding symptoms, but did not have a doctor-diagnosed bleeding disorder. The most common symptoms reported were: bruising, heavy menses, post-partum bleeding, nosebleeds and joint pain. Three of the women reported a family history of a bleeding disorder, one had no family history, and one was uncertain whether there was a family history.
The other 48 women did report receiving a bleeding disorder diagnosis from a physician.
The chart at right shows a breakdown of the diagnoses received.
Of the 48 women with a diagnosis, the following is a breakdown of the type of provider they see for regular care of their bleeding disorder:
- 39 Hematologist
- 5 Family Practice physician
- 5 None
Only 29 women reported receiving any type of treatment for their bleeding disorder. Nineteen of the 48 reported they did not have a treatment plan and do not currently receive any treatment for their diagnosed bleeding disorder.
“My hematologist told me I have moderate hemophilia. He told me I need treatment but he refuses to write the script for factor and tells me to go to the local HTC. My local HTC doctor is one who believes women don’t actually have hemophilia and will not treat a woman. I have bleeds a lot. And a lot of pain. But can’t get treatment.” — Female survey participant
What Did We Hear?
Many women did report receiving a diagnosis, getting good care and following a treatment plan which includes factor. However, others reported care that has been less than adequate and some women reported being refused care altogether. According to these 53 surveys, three women were denied care by local physicians and 10 women reported instances of refusal of care at HTCs across the country simply because they were women.
What Do Women Want?
In addition to asking women about their care, HFA also wanted to know what the needs are of the women across the country who experience bleeding disorder symptoms or who have a diagnosis of a bleeding disorder.
We heard overwhelmingly that women want more information and education about bleeding disorders. The majority of the women also stated that provider education specific to women with bleeding disorders is an unquestionable need. Other tools mentioned that women felt would be helpful in managing their bleeding disorders were: HTC uniformity of care, a social media connection, opportunities for social interactions and support.
“I discovered that my hematologist did not believe in female hemophiliacs. I then went to the Mayo Clinic in Rochester, where a hematologist for the very first time called me a hemophiliac. I am not a symptomatic carrier! I am a HEMOPHILIAC! I am routinely referred to as a symptomatic carrier by my local hematologists.” — Female survey participant
What is HFA doing?
We have reported to HRSA all 10 of the instances where an alleged denial of care to women occurred at HTCs. HRSA has been receptive to this information and will be working with their Regional Coordinators on this issue.
Some of the women who took the survey found insurance issues to be an additional barrier to receiving quality care. Organizationally, we have created Project CALLS (Creative Alternatives to Limiting and Lacking Services). Project CALLS is an opportunity for the community to share their experiences with insurance issues while helping the entire bleeding disorders community. Through Project CALLS, HFA will collect stories from the bleeding disorders community across the country, collate the data, identify trends, and use the information to build a case for changes in the insurance industry.
Programmatically, HFA’s Blood Sisterhood program will continue to provide the education, support, and resources that women need to reach a diagnosis, and continue that support through the stages of their lives with a bleeding disorder. In 2015 we had 20+ local educational sessions of Blood Sisterhood happening at our local member organizations, as well as webinars, an improved website information for women, and a mobile app that allows women t track their menstrual cycles and bleeds and share that information with their health care provider.
We have added a new physician, Robert Sidonio, MD, MSc, as a medical advisor to our professional advisors team. Dr. Sidonio is passionate about addressing the needs of women with bleeding disorders.”
We also are partnering with other organizations to raise awareness, particularly those that provide education and training to health care providers such as the Foundation for Women and Girls with Blood Disorders.
“I have repeatedly been told, ‘you are just mild’ even when having bad issues. I feel like they don’t listen to me or my concerns. I wish they would treat the symptoms and person, not how the labs read.” — Female survey participant
HFA plans to continue the “Share Your Story” survey and learn from women across the country over the next year. A more detailed report of the first year will be available in the spring of 2016.
We will also continue listening to women and collecting their stories through this survey and other means about the health care they are receiving. We will persevere in reporting to HRSA about women with a diagnosis who have been refused care at HTCs, as we continue to seek our overall objective of assisting women and raising a united voice for positive change that is felt by the women in our community