All articles tagged with #patient advocacy
Nicole Dyer-Griffith highlights the exorbitant cost of cancer medication in Trinidad and Tobago, which can reach $40,000 per month, making treatment inaccessible for many. She advocates for a dedicated patient support and advocacy center, the Healing Hub, to provide credible information and emotional support, aiming to establish a free, physical facility by 2026 to improve patient care and reduce healthcare disparities.
To maximize the effectiveness of a doctor's visit, patients should prepare by making a list of symptoms and questions, updating their medical history, and bringing a friend if needed. This helps ensure important concerns are addressed and reduces the chance of forgetting key information during the appointment.
Natasha Reynolds, a 23-year-old woman from Sheffield, experienced an 18-month delay in ovarian cancer diagnosis due to her symptoms being dismissed by doctors as IBS or endometriosis, highlighting the need for better listening and investigation by medical professionals. Now cancer-free after surgery, she urges women to advocate for themselves and for doctors to take persistent symptoms seriously, as new NHS guidelines aim to improve early diagnosis.
The article highlights numerous cases of medical gaslighting where healthcare professionals dismissed or misdiagnosed patients' symptoms, often leading to delayed treatment and serious health consequences. It emphasizes the importance of patients trusting their instincts, seeking second opinions, and being proactive in their healthcare, while also acknowledging that some misdiagnoses are unintentional due to biases or lack of knowledge.
Patients across the U.S. are surprised by high 'facility fees' added to medical bills for outpatient visits, often without clear prior notice, leading to confusion and financial strain. Experts advise asking about these fees beforehand, reviewing bills carefully, and understanding state laws to manage costs. If unaffordable, options include negotiating with providers, seeking discounts, or exploring legal protections. The issue is compounded by hospital ownership of outpatient practices and limited regulation, prompting calls for legislative change.
Patients with ultra-rare diseases like Hope Filchak's MLS syndrome face challenges in accessing treatments due to strict FDA approval processes, exemplified by the rejection of the drug elamipretide despite positive advisory committee recommendations, raising concerns about the balance between safety and urgent patient needs.
The article highlights the struggles of Americans dealing with health insurance issues while facing serious medical conditions, such as cancer. Patients like Arete Tsoukalas and Isaac Rosenbloom face high costs and denied treatments, leading to significant stress and financial burden. The recent shooting of UnitedHealthcare CEO Brian Thompson has brought attention to widespread frustrations with the insurance system, as many people share stories of denied claims and unexpected bills. Despite these challenges, a majority of insured adults still rate their insurance positively, according to a KFF survey.
Joe Faratzis, diagnosed with stage 4 colorectal cancer at 28, shares his experience to raise awareness about early detection. He ignored symptoms like night sweats, weight loss, and blood in stool, which led to a late diagnosis. After undergoing chemotherapy and surgery, he now advocates for early screening, emphasizing that timely medical attention could prevent severe outcomes. Faratzis highlights the importance of recognizing symptoms and not dismissing them, urging others to seek medical advice promptly.
Tia Bradbury, a 25-year-old pregnant woman from Cheshire, experienced severe headaches and vision loss, initially dismissed by doctors as migraines. Persisting for a proper diagnosis, she discovered she had a brain tumor, which was successfully removed through surgery. Bradbury emphasizes the importance of trusting one's instincts and advocating for proper medical attention, as her persistence likely saved her life. Post-surgery, she has no migraines and a renewed appreciation for life, urging others to push for thorough medical evaluations when experiencing concerning symptoms.
Long COVID patients are urging the federal government to focus research efforts on developing treatments, as the NIH's $1.15 billion RECOVER initiative has yet to produce any FDA-approved drugs. Despite the vast impact of long COVID, affecting an estimated 17 million adults in the U.S., the initiative has primarily funded observational studies rather than clinical trials. Patients and advocates criticize the lack of urgency and prioritization of clinical trials, while the NIH plans to allocate an additional $515 million towards research, with a focus on potential therapies.
Bryony Thomas, a pancreatic cancer survivor from Bristol, is advocating for greater awareness and open discussions about symptoms of the disease, such as changes in stool, which are often overlooked. After being given 12 weeks to live, she underwent successful surgery and chemotherapy, and now requires lifelong medication. Thomas emphasizes the importance of early diagnosis and is raising awareness by participating in the London Marathon for Pancreatic Cancer UK.
Katie Coleman's memoir, "Too Young for Cancer," recounts her journey through a Stage 4 cancer diagnosis after years of being misdiagnosed due to her young age. Despite the devastating news, Coleman finds relief in finally having an answer to her health issues and is determined to fight the disease. Her story highlights the challenges of being taken seriously by medical professionals and the emotional impact of a cancer diagnosis on her and her husband.
Nikki Helme, a 35-year-old mother from Chorley, visited her GP 12 times before being diagnosed with a rare neuroendocrine tumour in her digestive system. Initially dismissed and referred for 'health anxiety' treatment, Helme's persistence led to the discovery of the tumour after she reported passing blood. She described the experience as demoralizing and urged GPs to listen more attentively to patients. The local health board emphasized ongoing GP training but did not comment on Helme's specific case.
Courtney Bailey, a 26-year-old woman, was initially dismissed by doctors who attributed her bleeding nipple to hormonal changes, only to later discover she had early-stage breast cancer. After a biopsy revealed precancerous cells, she opted for a mastectomy, emphasizing the importance of self-advocacy in healthcare. Bailey's experience highlights the rising breast cancer rates among young women and the need to challenge age-based medical assumptions. She urges women to trust their instincts and push for referrals if they notice unusual symptoms.
Gwen Edwards, a type 1 diabetes patient from Anglesey, had to turn to social media to find insulin due to a shortage of her usual medication, Fiasp FlexTouch. Despite a shortage notice sent to surgeries and pharmacies in Wales, she was not informed and struggled to find insulin at local chemists. She is now calling for better communication and awareness about essential medication shortages. The Welsh government and health board stated that they do not routinely inform patients directly about such shortages, relying on healthcare professionals to manage the situation.