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Patient turned advocate Carrie talks about her missed cancer & Indiana's Density Reporting Law

 


 

Patient turned advocate Carrie talks about her missed cancer & Indiana's Density Reporting Law

 

Carrie never missed a mammogram.  In fact she was getting mammograms in 6 month intervals.  No wonder she was stunned when her breast cancer was diagnosed at an advanced stage 3A within weeks of another NORMAL mammogram. 

 

She asked for copies of her mammography reports from her physician as she learned that her docs received a different report than she received after her mammography exam.  Each of these covert reports stated that her breasts were dense and an ultrasound would be helpful as added screening to her mammogram. 

 

Outraged that this information was kept from her, and that none of her health care providers ever mentioned this to her, Carrie had to change this potential fatal flaw in breast cancer screening.  Carrie wanted to make sure that no other woman in Indiana is not informed of her dense tissue and its impact on hidden and delayed advanced cancers.

 

She found Dr. Cappello and Are You Dense Inc. & Are You Dense Advocacy Inc through a google search.  Carrie immediately advocated on an Indiana density reporting law as Dr. Cappello provided leadership from her years of advocacy, beginning in her state of Connecticut in 2004, right out of the gate of her advanced diagnosis.  The relentless pursuit of exchanging an injustice to justice worked as Indiana became the 25th state to disclose dense tissue to the patient through the mammography reporting results.

 

Carrie's interview with the Indy Star includes a short video while highlighting a new automated technology coming to the state - a better tool to detect cancer in dense breasts.

 

 

More of Carrie's story here.

Indiana Density Reporting Law

 

Indiana’s Density Reporting Statute and Indiana Administrative Code provide for disclosure of a patient’s breast tissue composition BIRADS C (Heterogeneously Dense) and BIRADS D (Extremely Dense) as part of her mammography reporting results.

History

In 2013, the state of Indiana passed a provision that a facility that performs mammography shall, if that patient is determined to have ‘high breast density’ that would require follow up care or testing notify the patient of that determination. The law also included an insurance coverage provision for health plans and medical services for women with ‘high breast density.’  The Act also provided for the Medical Licensing Board of Indiana to adopt rules or protocol establishing an education program used to educate women with ‘high breast density,’ standards for providing annual screening or diagnostic test for a woman who is at least 40 years of age and who has been determined to have ‘high breast density.’  Reference Senate Enrolled Act 414 (2013).

 

Are You Dense Advocacy Inc. had two concerns with the language of the legislation.  The definition of ‘high breast density’ was unclear, in addition to the disclosure of ‘high breast density’ to the patient was dependent upon whether patient required follow-up care or testing. 1) the definition of ‘high breast density’ in the Act stated: ‘High breast density’ means a condition in which there is a greater amount of breast and connective tissue in comparison to fat in the breast 2) That a patient’s ‘high breast density’ would only need to be disclosed if follow-up care or testing was determined to be necessary.  These concerns led to the determination that Indiana’s law in 2013 did not meet the standards of a density reporting law.

 

 

Continued Advocacy after 2013 Legislation

We continued advocating with Indiana patient advocates to clarify the language in the legislation and to make certain the patient’s voice was reflected in the work of the rules committee of the Medical Licensing Board.  To ensure that the disclosure of a woman’s dense tissue is not dependent on whether her health care providers believe she needs added screening, Are You Dense Advocacy, Inc. along with a patient advocate and attorney worked with legislators, government officials and rules committee personnel to ensure that dense tissue, at the time of a woman’s mammography results, is disclosed to her. Ongoing communication and collaboration, through a series of conference calls, continued to ensure that patients receive information about their dense tissue that was not dependent on any follow-up care or testing, that the rules would define the definition of ‘high breast density’ to include BIRADS C & D, and resources about dense tissue and breast health would be available as part of the education program on the Indiana’s government’s website.

 

 

Goal Achieved for Patients 2016

Our goal was achieved as an amendment to the 2013 statute was enacted in 2016 eliminating the added language that would require follow up care or testing. Notice of high breast density Sec. 1. A facility that performs a mammography examination shall, if the patient is determined by the facility to have an amount of breast and connective tissue in comparison to fat in the breast, notify the patient of the determination. The notice required under this section must be included with a summary of the written mammography report. (Chapter 13.2)

 

 

Article 16: High Breast Density Guidelines, adopted by the Medical Licensing Board in 2016 established both the education program and the screening standards for women who have been determined to have ‘high breast density which is defined as ‘Extremely dense and heterogeneously dense tissues are breast tissues with high breast density.’ In addition, the guidelines state that the physician interpreting the mammography report shall consult with the physician ordering the mammography examination and the patient to determine what follow-up care or testing is appropriate. There are also other provisions, including resources available to patients and Screening and Testing protocols which can be found on the Indiana Government website.

 

 

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