From Treatment Desert to Blooming Field of Breakthroughs: Multiple Sclerosis

From Treatment Desert to Blooming Field of Breakthroughs: Multiple Sclerosis By Kathleen Hoffman, PhD, MSPH Research prior to 2019 underestimated the prevalence of neurological diseases, and specifically Multiple Sclerosis (MS) by over one-half. A new algorithm, including health insurance claims data, determined that the population suffering from MS was not around 400,000 but actually closer to one million (913,925).1,2 This discovery continues the forward progress begun in 1981 when the first MRI pictures of a brain affected by MS were produced, revolutionizing MS diagnosis. Eleven years later, in 1992, the National Multiple Sclerosis Society funded the first [...]

Updates from ASCO and ESMO 2021 Add to Successes in Hodgkin Lymphoma Research and Treatment

Updates from ASCO and ESMO 2021 Add to Successes in Hodgkin Lymphoma Research and Treatment By Kathleen Hoffman, PhD, MSPH In 1832 Sir Thomas Hodgkin described a morbid condition of the glands and spleen which in 1865 was named Hodgkin disease by Samuel Wilkes. It was a fatal disease. Yet it has become, as this Inspire patient describes, highly treatable.1 my first oncologist, trying to reassure me and make me feel better, told me that if someone said to him it was DEFINITE that he had to get cancer, but he could choose what kind, he would, [...]

Will New Medication Guidelines For Rheumatoid Arthritis Improve Patient Satisfaction With Treatment?

Will New Medication Guidelines For Rheumatoid Arthritis Improve Patient Satisfaction With Treatment? By Kathleen Hoffman, PhD, MSPH Despite the advances and diversification of disease modifying antirheumatic drugs (DMARDs) to treat rheumatoid arthritis (RA), a recent report surveying current RA patients showed that the majority are not satisfied with their treatment experience. In a study of 258 patients, all of whom were taking at least 1 DMARD, only 26% were satisfied with the results of their treatment. In fact, 43% reported taking pain relievers daily or almost daily, and 44% said that they were currently having a flare.1 [...]

What Are Patients and Caregivers Talking About? Lung Cancer Biomarkers

What Are Patients and Caregivers Talking About? Lung Cancer Biomarkers By Kathleen Hoffman, PhD, MSPH Since the FDA approved the first targeted treatment for NSCLC in 2003, treatment decisions for NSCLC are increasingly made based on individual genomics.1,2  There are now 20 distinct biomarkers that serve as identification points differentiating cancer cells from healthy cells and distinguishing one expression of cancer from another. Science has progressed from identifying tumor cells on a slide to genetic and biochemical identification of NSCLC’s driving agents. Pharma companies are developing and improving increasingly targeted treatments.3 The science is also revealing just [...]

Impressive Advances in Treating Chronic Lymphocytic Leukemia

Impressive Advances in Treating Chronic Lymphocytic Leukemia By Kathleen Hoffman, PhD, MSPH Chronic Lymphocytic Leukemia (CLL) is the most prevalent form of adult leukemia, with about 20,000 new diagnoses per year in the United States alone.1  While it can occur at earlier ages, it is primarily a disease of older adults, with 70 years as the average age at diagnosis. Most of those who are diagnosed have no symptoms.2 CLL is often discovered when patients have a regular CBC test, and the findings indicate that the white blood cell (WBC) count is elevated. Under a microscope, the [...]

Undertreated Psoriasis Patients Need Answers

Undertreated Psoriasis Patients Need Answers By Kathleen Hoffman, PhD, MSPH A 2021 study concluded that psoriasis continues to be a common inflammatory disease, affecting more than 7.5 million adults in the US alone --  3.0% of the US adult population.1  By far the most common form (80% of cases)2 is plaque psoriasis, which intermittently creates patches of scaly and itchy skin, often on the scalp, knees, or elbows, but there are multiple distinct types with different presentations. The inflammation that creates psoriasis is also linked with an increased risk for other conditions, by a process that is [...]

Born Since 1990? Your Risk of Colorectal Cancer Just Went Up

Born Since 1990? Your Risk of Colorectal Cancer Just Went Up By Kathleen Hoffman, PhD MSPH The age at which people at average risk of colon cancer should start being screened used to be 50.2 In May 2021, the U.S. Preventive Services Task Force lowered it to 45. It’s been lowered because the age at which people are being diagnosed with colorectal cancer (CRC) is going down even as the survival rate of people with CRC over 50 is improving.1 My son, he’s 28, was diagnosed in September 2019 with stage 4 rectal cancer, the tumor was [...]

Positive News for Triple Negative Breast Cancer

Positive News For Triple Negative Breast Cancer By Kathleen Hoffman, PhD, MSPH Almost 150,000 patients and caregivers have interest in, have joined communities, have searched and posted about breast cancer and advanced breast cancer on Inspire. Almost 22,000 posts have been written about breast cancer research. There has been intense interest in finding medications that can penetrate the 10-20% of breast cancers that don’t respond to the medications that target three hormone and protein receptors on the tumor cell’s surface. When a breast tumor cell lacks the receptors for estrogen, progesterone, or HER-1 or -2 on the [...]

The Life Changing Diagnosis of Inflammatory Bowel Disease

The Life Changing Diagnosis of Inflammatory Bowel Disease By Kathleen Hoffman, PhD MSPH ​​ I've had UC for 4 years also. Diagnosed with a colonoscopy after 5 months of diarrhea, losing 1/3rd of my otherwise normal weight and enough blood to require a 2-pint transfusion. Pausing a conversation to use the restroom is biologically necessary, but can be socially awkward. People living with inflammatory bowel diseases (IBD) find themselves saying “Excuse me” many more times a day than they would like and experience pain with symptoms nobody enjoys talking about. The two most common inflammatory bowel diseases [...]

“I need to breathe” — Living with Asthma: Patient Experiences, Old Challenges, New Drugs

"I need to breathe" — Living with Asthma: Patient Experiences, Old Challenges, New Drugs By Kathleen Hoffman, PhD MSPH Earlier this month, the American Lung Association (ALA), Inspire’s partner for the “Living with Asthma” online community, announced that it is looking for patient panelists to participate in a PFDD (Patient-Focused Drug Development) meeting on Pediatric Asthma, to be held virtually on 9/20/2021. “The meeting will consist of an overview of pediatric asthma, an explanation of the Food and Drug Administration’s PFDD meeting process, and two panel sessions,” explained Annette Eyer, the ALA’s National Assistant Vice President [...]