Provider Resources
We believe that every patient should have the information necessary to make informed decisions about their or their loved ones’ cancer journey.
Since 2009, Hope Abounds Cancer Network has assisted patients with advocacy, navigating their cancer journey, and education.
Our 501(c)(3) non-profit organization consistently receives patient referrals from surgical and oncology departments.
Our services are provided at NO charge to patients.
Many healthcare providers have shared that they may feel overwhelmed by incorporating hereditary cancer genetics into their practice or don’t feel that they have the proper training to ensure patients are receiving the guidance they need around the testing results.
Hope Abounds Cancer Network is here to assist you and your staff in understanding and overcoming any barriers to help your patients with genetic testing.
Clinician
"In a world where families are spread across the country and where there are financial pressures to various medical diagnosis', a number of needs arise. Not everybody has the family support, not everybody has a connected church community or a group of individuals that will pour into their life at a time of need. Hope Abounds does step into that. You just can't replace someone saying, 'Yes, we've been through this with our daughter'. That raises a lot of credulity for people because you'd rather have breast cancer yourself, you'd rather die yourself than see your daughter go through breast cancer.”
Dr. Gregory
Your patient just received a cancer diagnosis.
What do they hear after that?
Honestly, not much. If a loved one is there, he or she may take better notes or hear what you communicate more clearly, but maybe not. So much is going on in your patient’s mind at that point.
It is essential that your patient understand their diagnosis, which specialist is going to help with each step of their care, as well as understanding ways to be informed to make the best decisions possible.
Cancer Family History Tool
Download the tool here
View the Healthcare Provider Cancer Tool Video
Hope Abounds has created a Family History Tool that screens for hereditary cancer syndromes, and can also determine if a patient may be eligible for hereditary cancer testing.
Guidelines to Help Decision Making
Find additional links below:
The American Society of Breast Surgeons
National Comprehensive Cancer Network
Society of Gynecologic Oncology
American Society of Clinical Oncology
American College of Obstetricians & Gynecologists
European Society of Medical Oncology
These guidelines provide clear direction and consensus on which patients should undergo hereditary cancer genetic screening or testing. Insurance guidelines and coverage closely follow these guidelines.
Provider Resources
Genetic counselors have extensive experience in genetics and are a great resource for clinicians.
Find a local genetic counselor: https://findageneticcounselor.nsgc.org/
Whether a genetic abnormality is found and assistance is needed navigating care or there is a lot of cancer in your patient’s family members but they test negative, a genetic counselor can assist you and your patient. These services can be in-person or telemedicine options also available for your patients. All clinical notes are then shared with you as the healthcare provider.
Safety Concerns with “At Home” Genetic Tests
Helpful article from CGI:
https://www.genomicinterpretation.org/why-cgi/
Many patients may have come to you with results from an at-home test, such as 23&Me. It is essential to understand that many of these tests are not fully evaluating all genetic alterations, even in BRCA1&2.
This testing is oftentimes not considered clinical testing and further testing is warranted.
Accuracy Matters in Genetics
Assesses genetic labs for honesty & accuracy
https://www.testwisely.org/
Every appropriate patient deserves the ability to have access to hereditary cancer genetic testing! At Hope Abounds Cancer Network, we also believe that it is essential that the result is accurate, as so much is at stake with the answers to this result.
Ensuring that every healthcare provider orders testing from a company that has proven that they issue accurate results is essential. Through funding from the Center for Disease Control (CDC) and the National Institute of Health (NIH), this website was developed to better understand how each genetic lab analyzes its data, as well as issues test reports.
Legal Protections for Patients with a Genetic Alteration
Equal Employment Opportunity Commission
EEOC.gov
A question that many of your patients may ask is if they will be discriminated against if a genetic abnormality is found.
The following laws have been put in place to ensure that patients diagnosed with a hereditary cancer genetic alteration are protected.
Genetic Information Nondiscrimination Act (GINA)
http://www.ginahelp.org/
GINA is a federal law that took effect on November 1, 2009. This law protects patients from discrimination for health insurance and employment.
Health Insurance Portability and Accountability Act (HIPPA)
https://www.hhs.gov/hipaa/index.html
HIPPA is enforced by the US Department of Health and Human Services (HHS). This organization enforces this federal civil rights law to protect individuals from unlawful discrimination.
The Patient Protection and Affordable Care Act (ACA) significantly expanded health insurance availability and consumer protections for all Americans. The law contains several provisions that benefit people affected by cancer, banning the practice of charging more or even potentially denying health insurance coverage due to a pre-existing health condition, prohibiting health plans from putting annual or lifetime dollar limits on most benefits, and more.
If your patients believe that their legal rights under the Affordable Care Act have been violated, they should contact their health insurer first to understand its coverage decision. If the issue cannot be resolved directly with the insurer, the next step is to contact your state insurance commissioner’s office.
Finally, you can contact the Center for Consumer Information and Insurance Oversight (CCIIO) Health Insurance Hotline at (410) 786-1565 or email: phig@cms.hhs.gov.
Research Findings for Providers
Few patients receive recommended genetic testing after cancer diagnosis: Standford Medicine
Are patients getting the advice they need to get tested?
Access the article here
This study recently published by Stanford Medicine in June 2023 shows thatamong more than a million patients diagnosed with cancer, only 6.8% received genetic testing within two years of their diagnosis! The article also outline how this testing can assist a healthcare provider discuss options with patients for medications or potential surgical decision changes.
Even patients with a cancer that aligned with guidelines for genetic testing - male breast cancer (50%), ovarian cancer (38.6%) and female breast cancer (26%) were not tested by their healthcare provider as often as recommended.
It is essential that patients are empowered to ask the right questions and understand if genetic testing could help them with their current diagnosis, as well as help generations to come!
Barriers, interventions, and recommendations: Improving the genetic testing landscape; A primary care providers guide to incorporating genetics
There is a pressing need to better integrate genetic testing for hereditary cancer risk into primary care settings.
Access the article here
Numerous clinical studies have been published stating that barriers to genetic testing should be removed within clinical settings. It is referenced that primary care providers should make increased efforts to incorporate this type of testing and conversation into their clinical practice.
Even if a healthcare provider is not comfortable with completing the testing, an appropriate referral to another healthcare provider or genetic counselor is recommended. If your healthcare provider is unable to provide genetic testing, seek care elsewhere as this is an essential part of your cancer journey.
Genetic Testing Fact Sheet
This genetic testing fact sheet was developed by the National Institutes of Health (NIH) within their National Cancer Institute divison. Numerous questions and potential issues within genetic testing are addressed by this unbiased fact sheet.
Genetic testing in prostate cancer management: Considerations in a primary care setting
Prostate cancer associated with a genetic alteration normally is more aggressive than those men that do not have a genetic predisposition. It is essential that men are tested, as it can change their surveillance and screening to either catch cancer earlier or have better access to monitoring through your insurance.
Genetic testing for colorectal carcinoma susceptibility
Colon cancer may be one of the most frequent forms of hereditary cancer. Many patients are unaware that colon cancer has a hereditary correlation for increased cancer risk. The prevelance for Lynch Syndrome is just as high for patients as the risks for carrying a Hereditary Breast and Ovarian (BRCA) mutation.
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