Goal 3: Advance Translational Research

Don’t ask, don’t tell; the hidden costs of heart, lung & stem cell transplantation:Financial burden on transplant survivors

Thousands of patients get cured of their diseases with organ and/or hematopoietic stem cell transplantation (HSCT), but what happens after that to their social and financial life? Drug costs, multiple tests, travel to transplant centers, and many other factors cost a fortune to the patients (and their insurers). Can the NHLBI provide systems based approach longitudinally to alleviate the long term cost burden on patients and insurers?

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Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

The number and indications for heart and lung transplant is increasing in the US. Number and indications for HSCTs in the US are increasing at an unprecedented rate with currently more than 20000 HSCTs being performed annually in the US alone. Most of the heart and lung transplant patients are on immunosuppressants for life which are responsible for significant out of pocket costs as a direct result or due to the complications of the drug therapy. Most of the patients with steroid refractory GVHD are also on immunosuppressants for many years post HSCT. Many patients file bankruptcy. QOL is significantly affected by severe impact of financial drainage.

 

The billed charges for heart, single lung, double lung and allogeneic stem cell transplant (2014 estimates) were $1,242,000, $785,000, $1,037,700 and $930,600 respectively (Milliman 2014 report). Now these figures widely differ from the published costs of transplantation, a figure some may quote to the patients’ e.g. the cost of allogeneic HSCT being $200,000 or more. To address the deficiencies in these transparencies is a big challenge since many factors play a role. These costs are for the first few months of transplants and represent only tip of the iceberg. Longitudinal assessment of both indirect and direct costs in transplant survivors is the first step towards devising strategies which can prevent financial toxicities in patients and as an indirect effect, would have a deep impact on private insurers and Medicare.

Feasibility and challenges of addressing this CQ or CC :

It is feasible to evaluate the long term financial burden on transplant recipients by well conducted prospective studies. BMT-CTN which is funded by NHLBI has already started a clinical trial (1101) in which ancillary Cost-Effectiveness Analysis data is being assimilated, and out of pocket costs, productivity, and QOL data is being collected. Such a study is imperative to do in transplant arena where costs are climbing at an unparalleled rate with no check points and patients continues to suffer. This would indicate the health care burden and the specific issues in transplant survivors which can help in formulating systems based practice both at individual and health policy level.

Name of idea submitter and other team members who worked on this idea : Shahrukh Hashmi

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Idea No. 586