Integrative Health Day is celebrated on January 23rd promoted by Health Funders Partnership of Orange County and Living Healthy OC. CIBD is proud to be a comprehensive care clinic participating in this initiative that aims to transform the culture of care delivery to our communities. It’s not about avoiding or simply preventing illness. We view health as a complete care of a body’s physical state, mental wellness and social happiness.
The integrative health practices include patient empowerment for self-care, the use of herbal supplements, group therapy, acupuncture and mind-body therapies such as meditation, yoga and tai-chi. We prefer non-invasive medical treatments which improves quality of life and benefits of cost savings.
Health Funders Partnership states that acupuncture help reduce the need of knee surgery and may result in a savings of up to $9000 per patient. Complementary Alternative Medicine (CAM) can reduce days in hospital or nursing home following stroke at a savings of $26,000 per patient and postpone heart surgery due to clinical improvements, resulting in return to work at a total savings of $31,000.
You can celebrate integral health day by sharing a healthy meal with friends, attending a yoga class or taking an afternoon walk at the beach.
On December 1st, people around the world came together to memorialize World Aids Day. The online community lit up with stories commemorating the struggles and triumphs of friends and loved ones. Tweets with “#WorldAidsDay” can be found everywhere on twitter from the U.S. White House to your everyday neighbors. The world showed up that day and declared in one voice that we will remember and we will fight on.
More than 1,300 people showed up at “the Grove” in Golden Gate State Park, which was declared by President Bill Clinton to be the national memorial for HIV/AIDS. It has taken over 150,000 volunteer hours and 25,000 volunteers to help maintain and ensure those who have lost their lives from AIDS are not forgotten and their story will be heard by future generations.
“The Grove is a place of both remembrance and renewal with people coming from all over the world to remember those lost and look to the future,” said House Democratic Leader Nancy Pelosi, who spearheaded the legislation. “Twenty-five years after this important designation, we still strive for a future in which we end stigma and discrimination, ensure continued research, care and resources, and, at long last, find a cure.”
The National Aids Memorial, in collaboration with HIV Story Project, unveiled a series of personal video stories told by survivors and focusing on the horrific plight of the Hemophilia community whose tragedy was caused by tainted blood supply. A historic first-time ever “Powering Through” panel discussion was held, bringing together leaders in the national Hemophilia community to discuss how the National Aids Memorial can support the ongoing healing process from the affliction.
World Aids Day ended at the Grove with a gathering of supporters for the reading of names that were engraved this past year into the Circle of Friends.
Source: Press Release
Researchers from The University of Texas at Austin have designed a capsule which carry a protein therapy that treats patients with hemophilia B. “There are approximately 400,000 people worldwide living with either hemophilia A or hemophilia B, both caused by a missing protein in their blood. Hemophilia B is caused by a missing or defective factor IX, a clotting protein.”
The bleeding disorder affects people throughout the world, unfortunately therapy is costly and therefore not easily accessible. The need for trained medical personnel to administer and evaluate complications associated with needle-based drug administration is also lacking in areas of the world. For the thousands of patients who do have access to care, they still must endure multiple injections weekly to control excessive bleeding and pain in the joints.
This capsule means hope for a less expensive, less painful treatment option than conventional injections or infusions. “While an oral delivery platform will be beneficial to all hemophilia B patients, patients in developing countries will benefit the most,” said Sarena Horava, the study’s lead author who is a recent Ph.D. graduate from the Cockrell School’s McKetta Department of Chemical Engineering and a National Science Foundation graduate research fellow. “In many developing countries, the median life expectancy for hemophilia patients is 11 years due to the lack of access to treatment, but our new oral delivery of factor IX can now overcome these issues and improve the worldwide use of this therapy.”
Clinical trials are being planned for the future and researchers indicate that their ultimate goal is to position this technology for Food and Drug Administration approval.
Source: UT Austin press release, November 28, 2016
The UT Physicians Comprehensive Sickle Cell Center is expanding their services to accommodate the growing number of patients effected by sickle cell disease. Sickle cell disease affects approximately 100,000 people in the United States, according to the Centers for Disease Control. Subspecialists, social services and behavioral health services have all been added to the center for a holistic approach to patient care.
Sickle cell disease is an inherited group of blood disorders that causes red blood cells to become misshapen or sickle-shaped. A red blood cell’s normal shape makes it flexible and allows it to easily move through blood vessels to deliver oxygen. When cells are sickle-shaped, they stick to vessel walls preventing blood and oxygen flow, which ultimately causes severe pain. These episodes of pain, known as “pain crises” can last a week.
Thanks to the medical professionals at the center, not only do patients have access to quality care, but there are also resources available to assist them in managing the pain. Infusion rooms are designed to help keep patients comfortable and relaxed. The rooms come equipped with televisions, treatment recliners, privacy curtains, pillows, heated blankets, and IV therapy used to keep patients hydrated while doctors monitor their pain.
What makes the Comprehensive Sickle Cell Center unique is that it specifically treats sickle cell patients from birth to death. The center focuses on providing a wide range of care and resources for its patients.
Last week, the House of Representatives nearly unanimously passed the 21st Century Cures Act which will be funded in part by 6.3 billion dollars from ACA’s Preventative Care programs. The bill boasts that it will encourage greater innovation and support research. Clearly more dollars for research is good but should it come at the expense of preventative care?
We can expect that cuts to preventative care programs will have an impact on all of us and potentially a negative impact to hemophilia patients. If funds and resources are not sufficient to address preventable conditions that develop and complicate health issues, then the burden for preventable conditions is borne disproportionately by minority and the underserved populations. Conversely, if research is funded more adequately and the purpose is to ultimately improve health outcomes, then we all become the beneficiary.
One focus of research that might benefit the hemophilia community may be found within the Precision Medicine Initiative (PMI). Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in environment, lifestyle and genes for each person. The NIH is leading the effort to build a national, large-scale research enterprise with one million or more volunteers to extend precision medicine to all diseases. They will start recruiting in 2017.