Patient Advocacy

Red Flags   * It cures ALL cancers (as if it was one disease) and other diseases. * It's based on a theory but not an actual test of the theory - a clinical trial. * It’s "natural" it has no side effects. * A conspiracy (greed / profit ..) explains why it isn’t prescribed by your doctor * It’s only available in a country that lacks medical regulations. * You can buy it online - without a doctor's prescription. * There’s only one group or person promoting it. * The "evidence" of benefit  is cherry-picked and based on test tube / animal experiments * The claim has not been tested in people – in predefined controlled clinical trials * It is said to “boost the immune system”   (without defining this or providing clinical evidence showing this is effective) * It relies on testimonials Red Flags and Free Speech - a more detailed narrative: While eating well and regular exercise will not cure or treat cancer, these CAN improve your general health and quality of lif

 Karl Schwartz artist & advocate for patients, democracy, and the planet  Artist BA - RIT | BFA - Maryland Institute of Art | MFA - Brooklyn College Paintings  | Figurative Drawings Patient Advocate Formerly: Patient representative to FDA (ODAC) President of Patients Against Lymphoma CIRB member - adult early phase cancer research NCI Steering Committee, Co-chair NCI Patient Advocate Committee Faculty - AACR/ASCO Methods in Clinical Cancer Research Workshop at Vail Lymphoma Topics Patient community advocacy:  Formerly moderator of support forums for patients and caregivers with lymphoma since 1997 – continuing on a volunteer basis.  Former President and co-founder of Patients Against Lymphoma (since 2002- 2018) with focus on advancing the well-informed and routine consideration of clinical trials.  Developed Trial-Talk: a registry of independent lymphoma and CLL experts to consult about clinical trials as part of a second opinion.  Author - Citizens Petition to the Food and Dru

The Problems with Testimonials   "For centuries doctors used leeches and lancets to relieve patients of their blood. They KNEW bloodletting worked. EVERYBODY said it did. When you had a fever and the doctor bled you, you got better. EVERYONE knew of a friend or relative who had been at death’s door until bloodletting cured him. Doctors could recount thousands of successful cases." You can't tell in an individual case what would have happened if nothing was done, or something else - particularly for a condition that has a variable clinical course. For example, most people with COVID survive; and many people with indolent cancers will live without ever needing treatment.  So like the blood-letting example they cannot assert that what they did mattered - or if they would have done well anyway.  - Testimonials can't inform about the number of persons who have used the intervention and did not benefit or were harmed. - Testimonials provide  no denominator - the number of

Karl Schwartz, @Lymphomation  Caregiver and patient advocate Formerly: Patient representative to FDA (ODAC) President of Patients Against Lymphoma CIRB member - adult early phase research NCI Steering Committee, Co-chair NCI Patient Advocate Committee Faculty - AACR/ASCO Methods in Clinical Cancer Research Workshop at Vail   My full advocacy CV Lymphoma simplified Guidelines at Diagnosis   The Problems with Testimonials Reporting Symptoms & Side Effects Red Flags & Free Speech - Identifying bogus information Citizens Petition to FDA to require or urge Quality of Life comparisons in clinical trials <a rel="me" href="https://mastodon.social/@lymphomation">Mastodon</a>

 For the Newly diagnosed This topic is for anyone who has just been diagnosed - or just prior to the diagnostic evaluation.  It is also for caregivers -- loved ones who will help the loved to navigate the diagnosis, treatments, and the related decisions to be made. A lymphoma can be a serious disease, but it is also  effectively treatable even at a very advanced stage. Some types of lymphoma are readily cured, other types can be managed well as needed. The rarer sub types require more attention than most diseases since experience and therefore expertise is less common, so you may need to get more involved with your diagnosis (seeking a second evaluation) and treatment (considering clinical trials) and also seek an expert at a major academic institution to work with your treating physician. For the indolent lymphomas it can be more likely that you will die with the lymphoma than from it. So let's get started on your new study project. Here are the steps we recommend you take as s

Lymphoma Simplified - how it begins Our body is made of countless cells of many types. Cells have specialized jobs and names, such as skin, nerve, heart, lung, blood, immune cells, and so on. For the human body to function normally, each organ must have a certain number of cells. ...By design, the cells in most organs have a short lifespan. Therefore, to continue functioning the body needs to replace lost cells by the process of cell division. ...Cell division and cell death are controlled by genes that are located in the cell nucleus. Genes function like an instruction manual telling the cell what proteins to make. These proteins in turn control the behavior of the cell. ...Some proteins direct the cell to divide; others how long it will live; and others begin cell death - a normal process by which the body rids itself of old, unneeded, or damaged cells. Under normal conditions there is a balance in which new cells replace old, and each cell carries out tasks specific to its