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Legislation to Improve SCD Data Collection and Care Moves Through Congress
On February 28 , Sens . Tim Scott ( R-SC ) and Cory Booker ( D-NJ ) introduced the Sickle Cell Disease Surveillance , Prevention , and Treatment Act of 2018 . This legislation will authorize a program within the Centers for Disease Control and Prevention ( CDC ) allowing states , academic institutions , and non-profit organizations to apply for grants to gather information on the prevalence of SCD , and the health outcomes , complications , and treatment experienced by patients . This bill also reauthorizes SCD treatment grants awarded by the Health Resources and Services Administration ( HRSA ), which will help improve access to care and quality of care for individuals with SCD .
“ While we know that many people living with SCD are unable to access quality care , policymakers and healthcare providers lack the data on just how widespread this need is , and where it is greatest ,” American Society of Hematology ( ASH ) President Alexis A . Thompson , MD , MPH , said in a statement commending the legislation . “ By expanding efforts to better understand the prevalence and treatment needs of people with this disease , and increasing access to quality care , the legislation introduced today by Sens . Scott and Booker has the potential to dramatically improve the quality of life of the 100,000 Americans with SCD . ASH is committed to working with the Senate to ensure passage of this vital legislation and collaborating with CDC and HRSA in our quest to conquer SCD .”
Similar legislation , sponsored by Reps . Danny Davis ( D-IL ) and Michael Burgess ( R-TX ), passed the House of Representatives on February 26 .
Source : American Society of Hematology press release , February 28 , 2018 .
Obesity Influences Hematopoietic Stem Cell Health
According to research published in the Journal of Experimental Medicine , obesity affects the long-term health of hematopoietic stem cells ( HSCs ). The researchers said their findings provide groundwork for investigating how lifestyle choices affect blood formation and may contribute to the development of blood cancers .
Investigators at the Cincinnati Children ’ s Cancer and Blood Diseases Institute found that obesity-related stresses alter the cellular architecture of the HSC compartment and reduce its long-term functional fitness . These alterations appear to be linked to overexpression of the transcription factor Gfi1 ( a regulatory gene ). In genetic models of obese mice , these effects were progressive and some of the manifestations persisted after the animals ’ weight normalized through researcherimplemented dietary controls .
“ There is now an understanding that the blood stem cell compartment is made up of numerous cell subsets ,” said principal investigator Damien Reynaud , PhD . “ Keeping this compartment healthy is essential to human health . This includes maintaining the diverse pool of HSCs needed to produce blood cells the body needs to function properly .”
He added , “ We want to better understand the molecular alterations in obesity to predict potential risks associated with the therapeutic use of stem cells isolated from obese donors .”
Sources : Cincinnati Children ’ s Hospital Medical Center press release , December 27 , 2017 ; Lee JM , Govindarajah V , Goddard B , et al . Obesity alters the long-term fitness of the hematopoietic stem cell compartment through modulation of Gfi1 expression . J Exp Med . 2017 December 27 . [ Epub ahead of print ]
Report Finds Drug Discounts to Insurers Continue to Rise
Analysts found that the average sale , rebate , and allowance offered to insurers for prescription medications increased from 28 percent in 2012 to 41 percent in 2016 . This trend is expected to increase , according to a recent Wells Fargo analysis .
Among large-cap pharmaceutical companies ( defined as a market capitalization value of more than $ 10 billion ), Eli Lilly saw the largest increase , with average rebates and discounts rising from 19 percent to 39 percent over the same four-year period . Merck followed , with discounts rising from 22 percent to 41 percent . Some specialty pharmaceutical companies also saw greater discounts , including Horizon ( from 18 % to 70 %) and Valeant ( 19 % to 41 %).
“ In reality , we believe that drug price increases are both a way to ‘ feed the beast ’ and a way to increase product profitability ,” wrote David Maris , MBA , author of the Wells Fargo report , in a note to investors . “ Many drug companies say they only net approximately half of the price increases they announce .”
Mylan representatives made a similar argument in a September 2016 congressional committee hearing on the company ’ s continual list price increases for its EpiPen product .
Because insurance copays are tied to the list price ( not the lower discounted price for a medicine ), consumers still pay more at the pharmacy counter . Drug makers have lobbied for a change that requires copays to be based on the discounted price .
Sources : FiercePharma , January 23 , 2018 ; STAT News , January 24 , 2018 .
ACA Reduced Outof-Pocket Spending , Study Finds
A study published in JAMA Internal Medicine found that the implementation of the Affordable Care Act ( ACA ) was associated with reduced out-of-pocket spending , although mean premium spending increased .
Anna L . Goldman , MD , MPA , from the Cambridge Health Alliance in Massachusetts , and colleagues used data from the Medical Expenditure Panel Survey to study changes in out-of-pocket spending , premium contributions , and total health spending after the ACA ’ s 2014 expansion of coverage . The study population included a sample of 83,431 U . S . adults aged 18 to 64 years .
Implementation of the ACA was associated with an 11.9-percent decrease in mean out-of-pocket spending in the full sample . These decreases were largest for the lowest-income cohorts ( 21.4 %), followed by the low- and middle-income cohorts ( 18.5 % and 12.8 %, respectively ).
“ However , many of these individuals continue to experience high-burden outof-pocket and premium spending ,” the authors concluded . “ Repeal or substantial reversal of the ACA would especially harm poor and low-income Americans .”
Mean premium spending increased 12.1 percent in the full sample and rose most sharply in the higher-income group ( 22.9 %). In the lowest-income group , the combined out-of-pocket plus premium spending decreased (– 16 %).
In the full sample and the lowestincome group , the odds of a household spending more than 10 percent of the family income in out-of-pocket costs decreased ( odds ratios [ OR ] = 0.8 for each ). In the middle-income group , there was an increase in the odds of high-burden premium spending ( OR = 1.28 ).
Sources : Physician ’ s Briefing , January 23 , 2018 ; Goldman AL , Woolhandler S , Himmelstein DU , et al . Out-of-pocket spending and premium contributions after implementation of the Affordable Care Act . JAMA Intern Med . 2018 January 22 . [ Epub ahead of print ]
Employer-Sponsored Health-Care Spending Rises to Highest Point in 2016
According to an annual report by the Health Care Cost Institute ( HCCI ), employer-sponsored health-care spending
12 ASH Clinical News April 2018