Shackleford’s HB 1065 passes unanimously out of Senate Committee

Today, Mar. 12, State Rep. Robin Shackleford’s (D-Indianapolis) House Bill 1065 passed unanimously out the Senate Health and Provider Services Committee.  The bill proposes the creation of the Cancer Clinical Trial Participation Program, allowing independent third parties, such as patient groups, corporations, or government entities, to cover ancillary costs for patients taking part in clinical trials in Indiana.

Shackleford released the following statement on the bill’s passage:

"My family has experienced firsthand the devastating impact of cancer. My father, mother, and oldest brother all passed away from the disease in their early 50s. Among them, my mom fought the hardest, battling cancer for over five years and participating in a range of experimental treatments. Throughout this time, we repeatedly heard the urgent need for greater diversity in clinical trial participation, as well as the immense financial burdens that accompany it.

“Today, with the passage of HB 1065 out of Senate Committee and its advancement to the Senate floor, we are one step closer to securing tangible relief for the individuals and families navigating the difficult and costly process of participating in life-saving cancer clinical trials.

“For those fighting cancer, their focus should be entirely on their treatment and recovery - not the overwhelming financial strain that often accompanies the decision to join a clinical trial. By alleviating these financial burdens, this bill will allow participants to focus on what truly matters, their health and well-being, free from the added stress of unexpected costs.

“I am optimistic that, with the continued bipartisan support, we will pass this crucial legislation and make a lasting difference for those who need it most. Having lived through this experience, I can say without a doubt that the relief this bill offers is not just necessary - it’s vital."

Shackleford’s HB 1065 passes out of the House of Representatives

Today, Feb. 17, State Rep. Robin Shackleford’s (D-Indianapolis) House Bill 1065, which aims to ease the financial burden for cancer patients participating in clinical trials, passed out of the House of Representatives and will go to the Senate for further consideration. If passed into law, the bill would create the Cancer Clinical Trial Participation Program. This program would allow independent third parties, such as patient groups, corporations or government entities, to cover ancillary costs for patients taking part in clinical trials in Indiana.

“Every year, millions of Hoosiers face a cancer diagnosis. The extreme emotional and physical burden that comes with a cancer diagnosis should not be accompanied by financial hardship. The Cancer Clinical Trial Participation Program would provide funding for people who wish to travel to take part in a potentially life-saving clinical trial. Several other states have started programs like this and had great success. No one should miss out on the opportunity for live saving treatment because of the financial burden,” Shackleford said.

Cancer is the second leading cause of death in Indiana, with an estimated 2.4 million Hoosiers, or approximately two in five people, eventually facing a diagnosis. Despite the importance of clinical trials in discovering new treatments, less than 7% of eligible patients currently participate. Barriers to participation include the cost of travel, lodging, and missed work, which can be a significant burden on patients and their families.

"This bill is an example of how bipartisanship can work to bring tangible benefits to our constituents," Shackleford continued. "My hope is that the two parties can continue to work together on issues like this so we can improve public health in our state for all people."  

Shackleford’s unoffered amendment to HB1604

Yesterday, Feb. 13, State Rep. Robin Shackleford (D-Indianapolis) was set to introduce her amendment to House Bill 1604 on the House floor, expecting a lack of Republican support. However, following a productive meeting with the Chairman of the Insurance Committee, Shackleford agreed to work collaboratively on the amendment's language and bring it to the committee for further discussion before it reaches the floor for a vote.

The underlying bill allows consumers to apply out-of-pocket medical purchases, such as those for medications and medical devices, toward their annual deductibles.

Shackleford’s unoffered amendment would have expanded on this by ensuring that the full cost of prescription drugs, including amounts paid through manufacturer copay savings programs, discounts, or coupons, counts toward both the patient’s annual deductible and out-of-pocket maximum costs.

Shackleford issued the following statement on the amendment:

“Nearly half of Americans are now enrolled in high-deductible health plans through their employer, and almost half of all commercial plans include a separate pharmacy deductible.

“This language is essential to protect Hoosiers from unexpected costs when their savings don’t count toward their deductible and to help ensure that they can afford their medications, no matter the challenges life throws their way.

“I’ve heard from many constituents and clients about this issue, and I’ve experienced it firsthand. To get the costly medication I need, I rely on a manufacturer's copayment card that reduces my payment. After that, I'm left with the remaining price of the drug until I meet my deductible. Unfortunately, the manufacturer’s share doesn’t apply to my annual deductible. Like many Hoosiers, it's frustrating to pay so much every month without seeing any progress toward meeting my deductible.

“Nineteen states have already taken action against copay accumulator programs, which prevent patients’ savings from counting toward their deductible. These programs boost insurers' profits while leaving patients with higher out-of-pocket costs, often without access to necessary medications. The harm caused by these programs is so significant that the Federal Employees Health Benefits Plan recently announced it would no longer accept any plans that use them.

“Fortunately, efforts are underway to address these harmful practices. Legal challenges to copay accumulator programs are already in progress, such as the Copay Accumulator Case 2023, highlighting the growing push to eliminate these harmful policies and protect patients. I look forward to continuing to work with committee members on this issue to ensure Hoosiers are no longer penalized for using savings programs that help them afford their medications.”

Shackleford’s HB1065 passes unanimously out of House Public Health Committee

Today, Feb. 11, State Rep. Robin Shackleford’s (D-Indianapolis) House Bill 1065, which aims to ease the financial burden for cancer patients participating in clinical trials, passed unanimously out of the House Public Health Committee. The bill proposes the creation of the Cancer Clinical Trial Participation Program, allowing independent third parties, such as patient groups, corporations or government entities, to cover ancillary costs for patients taking part in clinical trials in Indiana.

“Every year, millions of Hoosiers face a cancer diagnosis. As a state, we need to ensure that financial barriers do not prevent individuals from participating in life-saving clinical trials. By providing support to help cover costs like travel, lodging and other out-of-pocket expenses, we can help Hoosiers access the treatments that could save their lives. This legislation is a critical part of ensuring that no one is left behind due to financial challenges when it comes to fighting cancer,” Shackleford said.

Cancer is the second leading cause of death in Indiana, with an estimated 2.4 million Hoosiers, or approximately two in five people, eventually facing a diagnosis. Despite the importance of clinical trials in discovering new treatments, less than 7% of eligible patients currently participate. Barriers to participation include the cost of travel, lodging, and missed work, which can be a significant burden on patients and their families.

“Cancer is not a partisan issue. This bill serves as an example of how we can build bipartisan support to address the needs of our communities. By working together across party lines, we can improve the health and well-being of all Hoosiers, regardless of their background or financial situation,” Shackleford said.

“As we move forward, Indiana joins a growing list of states, including Texas, Wisconsin, Illinois, and Massachusetts, which have already taken similar steps to support patients in clinical trials,” Shackleford said.

Shackleford comments on Braun’s DEI executive order

Yesterday, Jan. 21, the Indiana Black Legislative Caucus (IBLC) held a press conference to discuss Gov. Mike Braun’s executive order prohibiting Diversity, Equity and Inclusion practices in state agencies.

State Rep. Robin Shackleford (D-Indianapolis) released the following statement in regard DEI prohibition:

“Indiana is already falling short of its goal to foster diversity in our businesses, and now, with the introduction of Senate Bill 235, we are taking an even greater step backward. This bill allows universities to ignore diversity goals and eliminates the obligation to support supplier diversity. What message does this send? That we don’t care about minority-owned businesses. That we don’t care about keeping dollars within our state that could uplift women and people of color.

“This is not just a policy issue—it’s a moral one. We cannot remain silent as our communities and businesses are pushed aside. The term “DEI” has become politicized and mischaracterized. At its core, this is about people. It’s about embracing our diverse communities and the businesses that make Indiana stronger. Whatever we call it, we must commit to Diversity, Equity, and Inclusion—not as a buzzword, but as a fundamental value that shapes the future of our state. It’s time to stand up and make our voices heard.”

Shackleford files 2025 bills focused on public health, tenant rights and Hoosier wellness

With the official start of the 2025 legislative session, State Rep. Robin Shackleford (D-Indianapolis) has filed bills on several key areas including public health; tenant rights and protections; and overall health and wellness for Hoosiers.

Chronic Obesity:

In Oct. 2024, Rep. Shackleford co-hosted the Chronic Obesity Stakeholders Meeting (COSM), bringing together experts to discuss initiatives that enhance access to effective healthcare interventions, improve nutrition and physical activity opportunities for children and address systemic barriers affecting underserved populations. A report generated from the meeting highlighted key legislative recommendations, including the long-term cost savings of addressing obesity, the need for stronger school nutrition standards and the importance of expanding access to preventative care and obesity treatments through the state Medicaid program.

As a result, Shackleford has proposed multiple pieces of legislation aimed at addressing chronic obesity, including, House Bill (HB)1202, which seeks to expand Medicaid coverage for obesity treatments, ensuring that more Hoosiers have access to the care they need.

“In 2022, obesity’s economic impact in Indiana was estimated at $9.3 billion, with $996 million directly affecting the state budget,” Shackleford said. “The disease drives up medical expenses, disability costs, and government spending on Medicaid and other public assistance programs. Expanding access to comprehensive obesity treatments through the SEHP and Medicaid, along with other interventions, could save taxpayer dollars and improve overall health outcomes for Hoosiers.”

In a presentation at the COSM, Tim Dall, Executive Director of Life Sciences Consulting at Global Data, highlighted that even a modest 5% weight loss could reduce the prevalence of chronic diseases like diabetes by 30% over the next decade, saving approximately $8 billion in medical costs. More substantial weight loss (20-25%) could result in an estimated $20 billion in economic savings within the same timeframe.

House Bill 1138 expands health coverage for state employees by mandating that their health plans cover anti-obesity medications and intensive behavioral and lifestyle therapies for eligible individuals.

House Bill 1139 focuses on improving Hoosiers' health by expanding the Indiana Department of Health’s (IDH) Pilot Produce Rx program that helps individuals be prescribed healthy food as medicine.

Shackleford’s legislation also focuses on improving the overall health and wellness of Hoosiers. One initiative aims to improve local wellness initiatives in schools, ensuring that students have access to health and wellness programs that promote a healthy lifestyle and positive learning environment. House Bill 1163 prioritizes student wellness by creating a fund that provides financial support to schools for implementing local wellness initiatives.

Public Health:

HB 1048 proposes an increase in personal allowances for Medicaid recipients and Hoosiers residing in health care facilities, raising the current allowance from $52 to $100 per month. This increase will help individuals purchase essential items not covered by Medicaid, improving their quality of life.

House Bill (HB) 1065 aims to support cancer patients by establishing a framework for organizations to provide financial assistance to those participating in clinical trials. This bill also requires the Indiana Department of Health to offer guidance and resources for program implementers. 

House Bill 1161 addresses the quality of care for home healthcare recipients by establishing a licensure program for home health aides, ensuring all aides are properly trained and qualified.

House Bill 1246 would establish a comprehensive student support program. This program would work to improve teacher-to-student ratios, enhance school safety and increase professional development opportunities of schools across the state. 

Tenant Rights:

Shackleford’s legislation also includes provisions aimed at strengthening tenant rights – a pressing issue in Indiana. Currently, on average, only 4% of tenants are represented in eviction proceedings, compared to 83% of landlords. However, when tenants receive legal representation, their chances of staying in their homes increase significantly—evidenced by the 84% of tenants in New York City who remain in their homes with representation. House Bill 1140 would provide funding for counsel when tenants are facing eviction. 

The Indiana Housing and Community Development Authority would administer these programs. Additionally, House Bill 1162 seeks to protect renters by capping excessive rent increases, limiting both the percentage of increase and the frequency with which rents can be raised in a given year. These measures will provide more stability and security for tenants across Indiana.

“I am proud to have introduced legislation that addresses critical needs across our state. From ensuring cancer patients in underserved areas to expanding access to healthy food, these bills reflect my commitment to improving the wellbeing of all Hoosiers. After all, health truly is wealth. By working together, we can build a healthier, stronger and more equitable future for our communities.”

IBLC: Pryor, Shackleford elected to National Black Caucus positions

State Reps. Cherrish Pryor (D-Indianapolis) and Robin Shackleford (D-Indianapolis) were elected as treasurer and regional chair, respectively, at the National Black Caucus of State Legislatures (NBCSL) at the annual conference in Washington, D.C.

The NBCSL consists of over 700 legislators from around the United States working to create public policy and share ideas from all 50 state legislatures.

This marks Pryor's third term as treasurer for the national organization. As treasurer, Pryor is a member of the NBCSL's executive leadership team and will work at the helm to support lawmakers from across the country as they craft and champion legislation in their respective legislatures. The Executive Officers for the NBCSL were sworn in during the national conference last weekend in Washington D.C.

"I am honored my colleagues from across the country voted for me to serve another term as their treasurer," Pryor said. "My previous two terms allowed me to transition staff and our accounting system to better accommodate the organization. There is still work to be done and I am up to the task as we work to assist NBCSL members and provide them with resources that will help to improve our communities."

Pryor currently serves as State Representative for Indiana House District 94 and as House Democratic Floor Leader. Pryor previously served as chair of the Indiana Black Legislative Caucus. She has also previously served as a Regional Chair, Regional Vice Chair, At-Large member and co-chair of the nominations committee with NBCSL.

This is Shackleford's first election as regional chair, which represents Indiana, Minnesota and Illinois. Her prior NBCSL executive positions included at-large member and committee woman. Shackleford currently serves as State Representative for Indiana House District 98 and chair of the Indiana Black Legislative Caucus Education Foundation.

"Strong, collaborative leadership translates to strong political movements and change, and I look forward to starting my role as regional chair," Shackleford said. "I plan to help continue the work we're doing in the Midwest to enhance the quality of life for residents across the board and help more people get engaged in their local government."

Chronic Obesity Stakeholders Meeting highlights collaborative efforts to tackle public health challenges

Last week, on Oct. 31,  Rep. Robin Shackleford (D-Indianapolis), the Ranking Minority Member of the Public Health Committee co-hosted the first Chronic Obesity Stakeholders meeting alongside the Chairman of the Public Health Committee, State Rep. Brad Barrett (R-Richmond). The meeting brought together key experts and community leaders to address the pressing issue of obesity in Indiana by developing legislative strategies and policy interventions.

Recent statistics from the Indiana Health Department reveal that 71% of Indiana adults are overweight or have obesity, and 32.5% of Indiana youth face similar challenges. Indiana State Health Commissioner, Dr. Lindsay Weaver shared an example to illustrate this further - 71% of Indiana’s population could fill up Lucas Oil Stadium 66 times. The statewide adult obesity rate in Indiana stands at 43.6% (2018-2023), underscoring the urgent need for action to combat this critical public health issue. Alarmingly, obesity rates are notably higher in minority communities compared to rural areas, highlighting a significant health disparity that must be addressed.

The meeting featured presentations from: 

• The Indiana Department of Health;

• Life Sciences Consulting, Global Data, American Diabetes Association; 

• Franciscan Health’s Cardiology Department; 

• Jump in for Healthy Kids; 

• Feeding Indiana’s Hungry; 

• Indiana State Chapter of the ASMBS; and 

• The Diabetes Impact Project. 

Highly respected organizations gave testimonials, including: 

• Eli Lilly; 

• Marion County Health Department; 

• IU Health; Major Health Partners; 

• Joie de Vivre Medical; 

• Indiana Minority Health Coalition; 

• Eskenazi Health; and 

• Central Indiana Building Trades. 

These respected groups emphasized the necessity of immediate action, explaining the life-altering impacts of obesity, particularly among youth. Public comments were also given by individuals who expressed their concerns about addressing obesity in Indiana.

The discussions emphasized that the effects of obesity extend far beyond weight. It can lead to severe health complications and a diminished quality of life. 

Top legislative recommendations discussed include: 

• Medicaid coverage for weight loss medication; 

• Increased funding for community health workers to assist diabetic patients; 

• Implementation of nutrition and exercise standards in childcare facilities; 

• Expansion of the ISDH Produce Rx and Health First Programs; 

• Reduction of weight bias; 

• Offer insurance coverage and wellness programs for obesity care at parity with other chronic diseases; and 

• Invest in community-based programs and education campaigns.

Rep. Shackleford released the following statement on the meeting:

“I want to express my gratitude to everyone who participated in this meeting by sharing their insights and personal experiences. Your dedication to addressing this critical public health issue is deeply appreciated. 

“Heartbreaking testimonies revealed the drastic measures some young individuals have to take, with the youngest participant undergoing bariatric surgery at just four years old. If weight loss medications were covered under Medicaid, many of these children might have avoided such invasive procedures, highlighting the need for access to effective treatments.

“As we look ahead to the upcoming legislative session, I am committed to utilizing your recommendations to inform our efforts. 

“Tackling chronic obesity is not merely a health concern—it’s a collective challenge that demands our united action. Together, we can develop effective strategies that will foster healthier communities across Indiana.”

Shackleford: We cannot allow caregivers to be punished for GOP's $1 billion Medicaid shortfall

Last December, a report from the Family and Social Services Administration (FSSA) revealed a massive forecasting error which resulted in a miscalculation of the funds needed to cover Medicaid expenses. The initial projection fell short of $1 billion dollars, forcing the FSSA to frantically to look for quick mitigation solutions. 

Republican lawmakers point to increased Medicaid enrollment during the COVID-19 pandemic, budget reversions and rising Medicaid enrollment as the reason behind the egregious error, though there is really no excuse that can justify this discrepancy. As a result of this blunder, $255.2 million will need to be appropriated prior to July 2024 to fund the program. In 2025, an additional $457.9 million will also need to be allocated. So, what does that mean for Hoosiers? FSSA is proposing to cut programs to save funding shortages created by an accounting error.

On Jan. 17, the FSSA released a statement proposing eight changes to help reduce costs. Among them is a plan to modify the Aged and Disabled Waiver. The proposal would forgo payments to Legally Responsible Individuals (LRIs) operating as Personal Care Attendants to those with disabilities. The consequences of this decision cannot be understated. Families across the state rely on the financial reimbursements offered through Medicaid Waivers to provide for those who need around-the-clock care. 

It is unconscionable that the FSSA is even considering halting financial assistance to caregivers. These reimbursements protect the most vulnerable in our state and punishing them for a GOP calculation error is no way acceptable. 

Families aren't the only ones pushing back. On Monday Jan. 29, the plan received pushback from the Intellectual and Developmental Disabilities Task Force including Lt. Gov. Suzanne Crouch who called on the Family and Social Services Administration to pause their cuts to the paid-family caregiver program. I applaud these bipartisan elected officials for offering their support to Hoosier families, and I encourage everyone to add their voice to testify against FSSA's plan. We’re glad to see leaders from all sides of the political spectrum joining the call for action Democrats have been pushing for months.

I have also taken steps to reduce the harm of this proposed action. On Tuesday, Jan. 30, I offered an amendment to House Bill 1386 during the Public Health Committee that would prevent Medicaid from reverting their funds, which was done and contributed to their budget shortfall. Of course, one could argue it could have been prevented if the reversion had not taken place. This would be especially effective during a budget year when funding is on the line.  As our population ages, we will see a rise in seniors who need care, which of course means the numbers for Medicaid enrollment will rise as well. By restricting the reversion of Medicaid funds, we will ensure that a healthy budget is protected from further reduction. 

I also am heartened to see Hoosiers speak out and refuse to take these changes lying down. On Monday, Jan. 22, parents with disabled children rallied at the Statehouse to protest these changes by the FSSA. Due to the current nursing shortage, many parents have been forced to take up the torch as full-time caregivers. This obviously means these parents cannot likely hold a full-time job, placing a financial strain on these individuals and their families. But these parents still need to afford food, housing and other basic costs of living. The funds distributed by the FSSA allow these parents to do right for their children and still receive an hourly income. 

Currently, the FSSA is encouraging parents to transition towards Structured Family Caregiving (SFC) as an alternative. SFC offers a daily rate ranging from $30-70 depending on the provider agency. But by contrast, currently, LSI's can receive payments up to $15 an hour, which is clearly the more advantageous option.

It is imperative that we provide these parents with the support they need to keep their children alive. I find it ridiculous that these families are the ones paying for the mistakes made by Republican lawmakers. 

I encourage Hoosiers to stand up for the well-being of these families and advocate against the proposed Medicaid Waiver changes. Comments on the proposal can be emailed to DDRSwaivernoticecomment@fssa.IN.gov.

Alternatively, feedback can be sent via the following address: 
FSSA Division of Disabilities and Rehabilitative Services P.O. Box 7083, Indianapolis, IN 46027 Attn: Medicaid Waiver Amendments 

Public comments will be accepted until Feb 16, 2024. Together, we can show the FSSA that we will not accept the burden they wish to inflict on Hoosier families navigating medically complex health needs. I refuse to stand by while these families are thrown under the bus. I call on the FSSA to listen to Hoosier families and reconsider this ill-advised decision. 

Shackleford’s bills for the 2024 legislative session

Today, State Rep. Robin Shackleford (D-Indianapolis) announced her agenda for the 2024 legislative session. This year, Shackleford's legislative priorities center on implicit bias in health care, provisions for public health, tenant protections and providing vouchers for child care services.

Shackleford has filed the following bills:

• HB 1167: Requires the medical licensing board of Indiana to adopt rules requiring a physician and a physician assistant who apply for a license or renewal to complete continuing education addressing the topic of implicit bias.

• HB 1168: Requests the legislative council to assign a study of directing the legislative services agency to prepare a racial equity impact note for a legislative bill introduced in a session of the general assembly.

• HB 1166: Establishes the chronic weight management task force to study and make recommendations concerning chronic weight related diseases and Type 2 diabetes.

• HB 1195: Establishes the access to counsel in eviction task force (task force) to review matters related to the eviction process and potential funding sources to increase a tenant's access to counsel in an eviction proceeding.

• HB 1257: Provides that a household is eligible to begin receiving assistance under the federal Child Care and Development Fund (CCDF) voucher program if the household's income eligibility by the office of the secretary of family and social services (FSSA): (1) has a household income that does not exceed 85% of Indiana's state median income for the household's family size; (2) includes an individual who is employed by a licensed child care center, a licensed child care home, or a licensed or registered child care ministry; and (3) otherwise meets federal eligibility requirements for the CCDF program.
  

" I am fully committed to protecting the health and safety of all Hoosiers, which is why my legislation focuses on supporting vulnerable individuals in our state," Shackleford said. "Far too many Hoosiers are susceptible to unfair treatment when seeking healthcare, sudden eviction and the extensive costs of child care. My legislation will ensure everyone in our state is given the same considerations, protections and opportunities for success regardless of race, ethnicity, religion, gender, sexual orientation, physical abilities/qualities, age, health status or financial position."

"It is up to the General Assembly to evaluate our public health systems, housing policies and financial assistance programs reflect the needs of everyone in our state. Simply put, the status quo is does not need of Hoosiers. We have an opportunity to get back on track and push for policies that support the well-being of all Hoosiers, so let's take it."