Resources for Patients and Caregivers
Where can I find stories telling me what different patients have experienced with their treatments?Open or CloseMany patients with HPV-caused cancers have gone public with their stories, with most advocating for giving girls AND boys the HPV vaccine so that others don’t have to go through what they did. Here are a few examples:
Jason Mendelsohn, also known as Superman HPV
Michael Becker, and his website A Walk With Purpose
Julie McCrossin’s story on TargetingCancer.com
Matthew’s story about his dat getting throat cancer on Shot by Shot.org
Lauren’s story about surviving cervical cancer at Texas Children’s Hospital
A profile of Michele Baldwin (aka Lady Ganga), who paddled down the Ganges river even as she was dying from cervical cancer to spread awareness about this disease and her fight.
There are many, many other stories out there from brave cancer survivors sharing their stories. You can try searching for these by searching for the name of the disease along with the phrase “survivor stories.”
Make sure to look at my HPV Cancer Support/Advocacy Groups page for a long list of organizations that are set up to help those with a variety of HPV-caused cancers. I’ve organized it both by anatomical site of disease, as well as geographically by country.
What is a healthcare advocate, and how do I find one?Open or CloseA healthcare advocate is a family member, friend, or hired professional who will work on your behalf to help you navigate the complexities of dealing with your illness. They can ask questions, write down information, and speak up for you so you can better understand your illness and get the care and resources you need. This can make it easier for you to deal with your treatments and aid your recovery.
You can find information about what health care advocates do (as well as a directory) on the National Association of Health Care Advocacy Consultants (NAHAC) website. You can also find a directory of health care advocates at www.AdvoConnection.com, on the Greater West Advocates website for those on the West Coast, as well as the Washington State Health Advocacy Association directory if you live in WA.
Patient navigation programs are intended to overcome obstacles that can prevent individuals from accessing cancer care and to improve coordination of their care. In 2017 The National Cancer Policy Forum held a public workshop to look at what are the optimal conditions and components of successful patient navigation programs in oncology. You can find videos of several of these presentations here.
The workshop featured invited presentations and panel discussions on topics that included:
1) Stakeholder perspectives on the role that patient navigation programs play in delivering high-quality cancer care
2) Access and utilization patterns of patient navigation programs
3) Models of delivery and design features of navigation programs throughout the entire cancer care continuum
4) Potential opportunities to improve the implementation and effectiveness of patient navigation programs
You might also find this NY Times story of interest: A Doctor’s Guide to a Good Appointment
How do I get access to articles in medical and science journals?Open or CloseThere are many ways to do this. It’s relatively easy to find articles online, but most of them are behind a paywall and can be very expensive to purchase (often in the $30 to $35 range per article). Articles can often be obtained for free if you have access to a research university or medical center. The librarians are very helpful with tracking down the information you are seeking. You can also reach out directly to the authors (usually the first or last one) and simply ask for a pdf reprint. If it is a fairly recent paper, this works a high percentage of the time. Older papers may be harder to access via this method because the authors may have moved since publicantion.
Details about how to do all this (and other resources) can be found in articles I’ve previously written:
Beg, borrow, or steal: Accessing unaffordable science journals (from Nov. 2014)
Sci-Hub vs. iPubSci: Another look at accessing unaffordable science journals (from Oct. 2017)
Here are other online resources you can tap into to access scholarly articles:
Unpaywall - This is a free database of scholarly articles. As of Oct. 2018 it contained nearly 21 million articles. Note that this is only a small fraction of all the science articles available for purchase. Not all of the versions of the articles available are the final published, peer reviewed versions. It is not easy to use, but the papers in Unpaywall can be accessed through Dimensions, Scopus, or Web of Science databases.
Open Access Button - This is a way to request research papers directly from the authors. I’ve not tried it, so I don’t know how well it works.
Kopernio - Another way to request pdf versions of millions of articles. Works through the Chrome (Google) browser.
IRIS.AI R4R (Research for Researchers) - Their website claims “We will help you bypass it by sending an email to registered authors and semi-automating the response, with a single click, completely legal and without delay..”
Sci-Hub has a huge collection of pdf reprint of science and biomedical papers. Note, however, that these papers have been pirated, and getting them via this route violates copyright protection laws.
Where can I find general cancer patient information?Open or CloseThere are many resources you can turn to help understand your specific diagnosis and get useful information about your disease:
The American Cancer Society has on their cancer.com website a lot of helpful, basic information for cancer patients.
CanCare (http://www.cancare.org) is an organization that provides support for cancer patients from cancer survivors. It’s available over the phone, via email and in person – one time or on an ongoing basis (888) 461-0028.
CancerCare (http://www.cancercare.org) works in a similar fashion. It offers free professional support services including counseling, support groups, educational workshops, publications, and financial assistance. (800) 813-HOPE
Cancer Today magazine is a monthly newsletter produced by the AACR (American Association for Cancer Research). It covers a pretty wide range of topics of interest to cancer patients and their caregivers.
Finding My Way is, according to the website, “an online self-help coping program that offers information, suggestions, and support for women and men who have recently been diagnosed with a cancer being treated with the aim of cure.” The program was developed as part of a clinical trial for anyone who was currently going through cancer treatment (surgery, chemotherapy, radiotherapy), or had been diagnosed in the past 6 months. They have now made Finding My Way publicly available, so that anyone with cancer is welcome to use it; however, it may be most helpful to you if you have been recently diagnosed with early stage cancer.
Patients Like Me - This portal does exactly what the name implies; it connects you with other patients who have the same or similar conditions. It does NOT appear at present to have information related to HPV-caused cancers, however.
Patient Power - This is an online portal that connects cancer patients to communities of other patients as well as cancer experts. At present the only HPV-caused cancers that it covers are head and neck cancers, but that may change. Lots of links to other organizations can be found there. Excels in providing video interviews with doctors from the latest medical conferences in a relatively easy to understand way.
I’m Not The Perfect Cancer Survivor. But I’ve Learned to Live With That. This is a clever graphic cartoon written and illustrated by a brain cancer survivor that lays out an approach for how patients and caregivers can navigate there own expectations, and those of others, as they fight the disease. He describes why you don’t have to try to be the Perfect Cancer Patient.
CURE Magazine - CURE magazine, launched in 2002 for cancer patients, survivors and caregivers, has become the largest consumer magazine in the United States focused entirely on cancer.
Database of Patient Experiences (DIPEx) - From their website, “this is a multimedia website and CD-ROM that links patients' experiences with evidence-based information about treatments and the illness itself and with a range of other resources that may be useful, including support groups and links to other websites. DIPEx aims to identify the questions that matter to people when they are ill and it has potential for informing patients, educating healthcare professionals, and providing a patient-centred perspective to researchers and those who manage health services.” Enables you to see videos made by others that have experienced what you may be going through. See a story about the pluses and minuses of this approach here.
The U.S. Cancer Statistics Data Visualizations website was produced by the CDC. According to the website, “Compelling graphics and analysis make it easy for anyone to explore and use the latest official federal cancer data by cancer type, state, demographics, and year. Working together, the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI) capture information on nearly every cancer diagnosed across the U.S. Each year, this information is updated and available as U.S. Cancer Statistics. The uniqueness of this cancer data is that it is not a sample or estimate – it is high-quality, complete data that comes from hospitals, physicians, and labs across the nation. Cancer counts and rates are essential to measuring progress and targeting action toward this major cause of death among Americans. The data visualizations make it easy for anyone to access the latest and official U.S. cancer statistics to help cancer control efforts have the greatest impact. Cancer care and prevention professionals, planners, advocates, journalists and policymakers are encouraged to access this new tool to view and report cancer statistics.”
How do I go about writing about how my cancer diagnosis has affected me?Open or Close
What can I do if I’ve been overcharged on my medical bills?Open or CloseIn the US, medical debt is the leading cause of personal bankruptcy.
Medical bills are often filled with errors, and you have the right to challenge them. Check out these articles for advice on how to do so:
Why Your Medical Bills Are Filled With Mistakes (The Street, 2017)
How to Negotiate Your Medical Bills (US News and World Report, 2016)
7 Smart Ways to Negotiate Your Medical Bills (Money, 2015)
5 Times You Definitely Need a Medical Bill Advocate (NerdWallet, 2014)
You can find someone who will work on your behalf by hiring a medical bill advocate. Most of them will not charge you a fee for their services unless they save you money, at which point they will take a percentage of what they save. Anyone who is uninsured and paying retail for expensive medical services should consider going this route. These advocates can significantly reduce what you owe by identifying errors, fraudulent charges and other ways the hospital may have taken advantage of you financially
Try a Google search “find a medical bill advocate” to locate someone that might be able to help you.
How do I gain access to experimental drugs and treatments that are not FDA approved?Open or CloseYou can do this through the FDA’s Expanded Access (sometimes referred to as the compassionate use) program. This program enables patients who have serious or immediately life-threatening diseases (and who are unable to participate in, or find an appropriate clinical trial) to gain access to promising investigational treatments. The FDA is extremely good at signing off on these requests. Approval of a request is nearly always completed within 24 hours. About 99 percent of these requests are granted every year PROVIDING the company producing the non-approved treatment or drug agrees to make it available to the patient. Drug and biotech companies are NOT obligated to make their products being tested available to any patients at all. They will do this on a case by case basis. Know that companies worry that if you run into safety or lack of efficacy issues while using their experimental treatments, this can come back to hurt them when they try to either (a) raise more money from investors, or (b) submit their drugs for FDA approval. The FDA CANNOT require drug companies to make their drugs available to you.
The recently enacted Right to Try legislation, contrary to what the name implies, has actually made it somewhat harder for patients to benefit from medicines in development. Before this law was passed, some 38 states already had Right to Try laws on their books. This new law was passed to solve a problem that didn’t exist, since patients have for years been able to access experimental drugs through the Expanded Access program mentioned above. That’s just one reason why this legislation was opposed by former FDA commissioners and a wide spectrum of healthcare groups, including the American Cancer Society and the National Organization for Rare Diseases. Their primary objection is that it bypasses the authority of the FDA, removing its oversight. If a patient dies while taking a drug under the Right to Try law, the FDA cannot include this information in its decision making process. It also weakens legal and financial safeguards for patients. For example, if a patient develops complications from taking a drug under the Right to Try Act, then their insurance company may not be required to pay for the medical care needed to deal with those complications. It also may absolve the drug company of certain liabilities associated with the taking of that drug. It’s a complicated issue for sure. You can read more about this legislation in this article from the American Society of Clinical Oncology and this one from Oncology Practice.