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Newsstand

Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

Foundation Update - May 2017

Originally Published: 05/19/2017
Foundation Update Newsletter - May 2017   One Online Destination for All Patients The January merger of AAMDSIF with the PNH Research & Support Foundation is now reflected in our unified website. With just a single click, patients can find all the same PNH information and resources they always had by visiting www.aamds.org.  Our top priority has always been to effectively present our organization as the resource hub for all bone marrow failure disease patients, families and health professionals. Presented here are links to PNH-specific information. >See a...

What you need to know about BMT reimbursement

Originally Published: 05/19/2017
The Centers for Medicare & Medicaid Services (CMS) issue the FY 2018 Inpatient Prospective Payment System proposed rule on April 14th. While we are disappointed that the proposed rule did not address allogeneic HCT cell acquisition, there are other significant changes that will impact your transplant center. 

Research in making blood stem cells in the lab advances

Originally Published: 05/18/2017
Researchers at Boston Children's Hospital have, for the first time, generated blood-forming stem cells in the lab using pluripotent stem cells, which can make virtually every cell type in the body. The advance, published today in the journal Nature, opens new avenues for research into the root causes of blood diseases and to creating immune-matched blood cells for treatment purposes, derived from patients' own cells. "We're tantalizingly close to generating bona fide human blood stem cells in a dish," says senior investigator George Daley, MD, PhD, who heads a research lab in Boston Children...

MDS patients in promising AML study on telomeres

Originally Published: 05/10/2017
Researchers said measuring DNA sections in cancer cells gave an "accurate indicator" of disease progression. Shorter DNA structures can leave chromosome ends exposed, accelerating cancer progression and drug resistance. The team believe the study could help doctors in choosing the most effective treatment for individual patients. Researchers from the university's School of Medicine said the tests can be used to predict the outcomes of patients with two different types of blood cancer - the bone marrow cancer myeloma and pre-leukaemia myelodysplastic syndromes (MDS). The latter is a bone...

On the horizon: Man-made bone marrow

Originally Published: 05/09/2017
Engineers at the University of California San Diego have developed biomimetic bone tissues that could one day provide new bone marrow for patients needing transplants. Bone marrow transplants are used to treat patients with bone marrow disease. Before a transplant, a patient is first given doses of radiation, sometimes in combination with drugs, to kill off any existing stem cells in the patient’s bone marrow. This pre-treatment is meant to improve success of the transplant by clearing up space in the marrow, allowing donor cells to survive and grow without competition from the patient’s own...

AHCA Passage

Originally Published: 05/04/2017
Dear Community, Patients lost out to politics today as Congress narrowly passed the AHCA. NORD, AAMDSIF and other patient advocacy groups - along with the American Medical Association, the American Nurses Association and AARP - are among the numerous national organizations who opposed the bill from the start. The AHCA jeopardizes the health and well-being of rare disease patients across the country. Among other defects, the bill allows states to opt-out of critical pre-existing conditions protections, including the prohibition on annual and lifetime caps and community rating – which keeps...

AMA on AHCA: New Changes Are Not Fixes

Originally Published: 05/04/2017
The most recent effort to broaden support for the American Health Care Act (AHCA), which comes in the form of an amendment proposed by New Jersey Rep. Tom MacArthur, does not address the most serious flaws in the bill and would also undermine critical health insurance consumer protections. For these reasons, the AMA “remains opposed to passage of this legislation,” the Association’s CEO and Executive Vice President, James L. Madara, MD, said today in a letter to House Republican and Democratic leaders. The amendment would let states ask the federal government for waivers from various health...

FYI: AARP Calls Health Bill Hazardous

Originally Published: 05/04/2017
A bill slated for a vote in the U.S. House of Representatives this week threatens your health — and your wallet — in many ways. The American Health Care Act (AHCA) was pulled from consideration in March because it lacked the votes. House leaders say they are mustering support for a revised version of the AHCA despite opposition from doctors, hospitals and consumer groups, including AARP. They hope to have a vote on the bill this week. Among the key provisions, the legislation would: Impose an age tax. Insurers could charge older adults five times what younger consumers pay for health...

Study of aplastic anemia med shows significant results

Originally Published: 04/20/2017
Background Acquired aplastic anemia results from immune-mediated destruction of bone marrow. Immunosuppressive therapies are effective, but reduced numbers of residual stem cells may limit their efficacy. In patients with aplastic anemia that was refractory to immunosuppression, eltrombopag, a synthetic thrombopoietin-receptor agonist, led to clinically significant increases in blood counts in almost half the patients. We combined standard immunosuppressive therapy with eltrombopag in previously untreated patients with severe aplastic anemia. Methods We enrolled 92 consecutive patients in a...

AAMDSIF Salutes Its Volunteers During National Volunteer Week!

Originally Published: 04/18/2017
April 23-29 is National Volunteer week – days of acknowledgement set aside each year for organizations to honor those who give selflessly of their time and talent to support the causes they care about. To help us accomplish many of our programs, events and services for the bone marrow failure community, we rely heavily on our dedicated volunteer base of over 500 patients, families and health professionals. Here’s who they are and what they do to keep AAMDSIF moving forward. Medical Advisory Board (MAB) This outstanding group of over 20 medical and research professionals are leaders in their...