Link-Up Rx

State: MI Type: Promising Practice Year: 2019

LHD: The Detroit Health Department (DHD) is located in Detroit, Michigan. Detroit had a population of 706,574 in 2016. Approximately 77% are African American and 39% of households live below the federal poverty line. There are 4,838 known people living with HIV (PLWH) in Detroit, 88% are African American and 53% identify as men who have sex with men.

Issue: HIV treatment is essential to improve individual health for PLWH and to prevent HIV transmission. Today, PLWH who start antiretroviral therapy (ART) soon after being infected can achieve viral suppression and live a lifespan comparable to HIV-negative individuals. In addition to improving individual health outcomes, PLWH cannot transmit HIV to their sex partners if they achieve, monitor and maintain an undetectable viral load (VL). In order to achieve viral suppression, PLWH need to take their medication daily and as prescribed. In Detroit, 83% of PLWH that were in medical care were virally suppressed in 2017.

Objectives: In May 2017, the DHD began planning for an innovative program called Link-Up Rx. Link-Up Rx is a partnership between pharmacists, Michigan Department of Health and Human Services (MDHHS) and the DHD. The program identifies PLWH who have not picked-up their ART scripts and offers them assistance with obtaining medication and accessing resources to help with medication adherence (e.g., housing, health insurance and counseling). The primary goal is to improve viral suppression amongst PLWH in Detroit by decreasing the length of time and instances of ART interruption. The secondary goal it to improve coordination between DHD and pharmacists.

Implementation: In May 2017, the Centers for Disease Control and Prevention released a request for proposals (RFP) for a Data to Care Rx program. The proposal outlined a program whereby a health department partners with insurance providers to intervene when clients do not pick-up their HIV medications. The DHD did not apply for the RFP, but formed a workgroup with MDHHS to explore how a program might work in Michigan. In August 2017, the workgroup brought together 25 pharmacists to create a program model. Between September 2017 and February 2018, MedCart Specialty Pharmacy was selected for a pilot and logistical details and legal concerns about data sharing were addressed. From February to June 2018, community engagement with PLWH was done. The pilot started in July 2018.

Results: As of December 2018, Link-Up Rx has been running for five months and 183 people have been initiated for outreach after they were three weeks past their prescription pick-up date. Out of these 183 people, 62% have been successfully contacted. Out of the 183 initiated, 166 (91%) cases have been completed. Of the 166 completed, 90 (54%) have been referred back to their pharmacy, clinic or to external supports like case management or insurance navigation.

Progress: The secondary objective of improving partnerships with pharmacists is off to a strong start. As the program expands we expect to add additional pharmacies. The primary objective of improved viral suppression will be measured 12 months after the program started to ensure a large sample size and to account for delays in lab reporting.

Success Factors: By taking time to meet with developing partners, DHD and MDHHS were able to develop a protocol and process that was optimal for everybody. By allowing several months for community engagement, all parties were able to get valuable feedback from PLWH that resulted in a better overall program. Also, the DHD was in a good position to implement Link-Up Rx because the outreach model is similar to a current HIV linkage program (Link-Up Detroit) they have been running since February 2017. In addition, Michigan is a Medicaid-expansion state which means many PLWH have access to health insurance.

Impact: Five months into the program, Link-Up Rx has already made an impact on PLWH. One example is an individual contacted in August. Upon contact, the individual had just finished his HIV medication and was on the brink of treatment interruption because his health insurance had lapsed. Link-Up Rx was able to connect him with an HIV community-based organization (CBO) that same day. Through communication with the CBO and MDHHS, we were able to get the individual immediately reapproved for Medicaid. MedCart was able to fill the client's script immediately, resulting in zero days of treatment interruption. In addition, the client is still in case management at the CBO which should minimize his chances for treatment interruption in the future.

Website: Link-Up Rx does not have a website. Link-Up Detroit's website is

Statement of Problem: Today, it is well understood that viral suppression is important for both individual health and HIV prevention. When people living with HIV (PLWH) have an undetectable viral load (VL), they have better health outcomes and the likelihood of HIV transmission to sex partners approaches 0%. Therefore, we must take every reasonable measure to engage PLWH in care and improve viral suppression in our communities.

The HIV Care Continuum details the steps an individual must go through from HIV infection to viral suppression. An individual must be tested for HIV to know their status. Then, they must have access to culturally appropriate medical services so they can stay engaged in medical care for the remainder of their life. Finally, they need a way to safely store and take their medication daily to achieve viral suppression. Each of these steps along the continuum provide an opportunity for public health interventions. Link-Up Rx focuses on achieving and maintaining viral suppression. 

Target population:  Detroit is Michigan's HIV epicenter, accounting for nearly one-third of the state's estimated HIV prevalence. There are 4,838 known people living with HIV (PLWH) in Detroit, 88% are African American and 53% identify as men who have sex with men (including MSM who inject drugs).

Link-Up Rx targets individuals who do not get their HIV medications from their pharmacy in order to minimize interruption in HIV treatment. Of the PLWH that were in medical care in Detroit, 83% were virally suppressed (viral load < 200 copies of HIV per milliliter of blood) in 2017. Detroit was selected to pilot Link-Up Rx because Detroit has a lower rate of viral suppression than the state of Michigan; 83% versus 89%.

While Link-Up Rx does not target a specific sub-population of PLWH in Detroit, young African American MSM between the ages of 15 and 29 have the highest rates of new infection and are least likely to achieve and maintain viral suppression in Detroit. In the Detroit metro area, young African American MSM were 6% less likely to be virally suppressed in 2017 compared to all PLWH. This inequity is largely due to decades of structural racism that have led to high rates of poverty among the African American community in Detroit. Additional barriers like homophobia within the Detroit community, a history of sub-par public education and lack of public transportation make each step along the HIV care continuum a big hurdle for young African American MSM to overcome. Five months into the program, it is no surprise that the majority of clients initiated for Link-Up Rx are African American MSM. Of the 183 individuals initiated, 113 (62%) identify as MSM, of which 108 are African American and 62 are young African American MSM age 15 to 29.

Innovation: Link-Up Rx uses an established HIV linkage program called Data to Care (D2C) in an innovative way. Data to Care (D2C) is a CDC-backed program that uses HIV laboratory test results to determine PLWH who are not in HIV medical care. Once determined not in care, D2C programs attempt to locate these individuals and (re)engage them in medical care. One downfall of D2C is that individuals have to be out of care for a relatively long period of time, 15 months, before outreach is initiated. By using prescription refill data instead of laboratory test results, Link-Up Rx speeds up outreach and minimizes the time PLWH might experience treatment interruptions that can result in an increased VL and greater likelihood of HIV transmission.

As detailed in the previous section, the initial idea for D2C Rx came from a CDC RFP in May 2017. The RFP suggested a 30-60-90 day approach. Based off pharmacist feedback in August 2017, Link-Up Rx sped this timeline up to 1-2-3 weeks. First, pharmacists identify PLWH who have not gotten their HIV medication and attempt to assist them with obtaining their medication. If this intervention is not successful, pharmacists contact clinicians to attempt to re-engage these individuals. In a tertiary intervention, pharmacists share individuals' information with DHD and DHD performs D2C-like outreach (phone calls, text messages) to find individuals. Depending on the individual's situation, the DHD may make additional referrals to HIV community-based organizations (CBOs) to assist with needs like insurance, housing and counseling.

In addition to expedited outreach, initial results show that Link-Up Rx as a significantly higher success rate of locating individuals, when compared to traditional D2C. From February 2017 to December 2018, Link-Up Detroit (D2C) finished investigating 628 cases of PLWH that are not in medical care. Out of the 628, 216 (34%) were successfully located and 85 (14%) accepted linkage to medical care. These results are significantly less than the results form Link-Up Rx. From July to December 2018, Link-Up Rx finished investigation of 166 people who had failed to pick-up their HIV script. Of the 166, 113 (62%) were successfully located and 90 (54%) accepted referrals back to the pharmacy, HIV clinic, or to support services at a community-based organization (CBO).

Another way that Link-Up Rx has been innovative is by establishing policies and procedures for data sharing between pharmacists, clinicians, MDHHS and DHD. Michigan, like all states in the US, has laws in place to allow for health departments to access individual health information about HIV diagnoses and treatment, in order to improve health outcomes and to minimize transmission of HIV. These laws are what allow local health department to implement D2C programs. Specifically, they allow local health departments to discuss an individual's HIV medical care with their HIV provider(s) without requiring a signed consent form. In the past, pharmacists had not been considered an HIV ‘medical provider' and had not been in communication with health departments about coordinating individual HIV care. Link-Up Rx has formalized the relationship between MedCart Specialty Pharmacy, DHD and MDHHS so that individual patient care can be better coordinated. Solidifying this relationship and data sharing policies between these partners has resulted in improved coordination for individuals who are sometimes interacting with several systems at once. For example, a client might interact with a doctor's office for their medication prescription and health monitoring, pharmacist for medication pick-up, a CBO case manager for non-medical needs and the state government for insurance. Both Link-Up Detroit and Link-Up Rx have helped bring together these different groups in a way that is innovative and takes some of the time-consuming coordination away from the client. Another important aspect of the data sharing agreement is giving pharmacists access to client's viral load results. This is important because pharmacists can provide more appropriate counseling on medication adherence, which further helps Link-Up Rx reach its primary objective of increasing viral suppression for PLWH in our community.

The primary goal of Link-Up Rx is to improve viral suppression amongst PLWH in Detroit by decreasing the length of time and instances of interruption in taking HIV medication. The secondary goal it to improve the partnership and coordination between the DHD and Detroit-area pharmacists. To achieve these goals we included several parties in the planning process and prioritized the involvement of PLWH. The DHD and MDHHS established the workgroup. Shortly after initial discussions, additional stakeholders were added. These stakeholders included pharmacists, insurance benefit managers, and the Michigan AIDS Drug Assistance Program (MIDAP). Legal representatives and the CDC were also consulted. After the draft protocol was developed, members of the workgroup went to 11 different community groups of PLWH to present the proposal and get input. During the planning process, we decided to pilot the program with one pharmacy because resources are limited. We chose MedCart Specialty Pharmacy because they provide HIV medication to about 25% of PLWH in Detroit. This entire process took about 14 months, 11 of which included all stakeholders mentioned above and five months where community feedback was actively sought from PLWH. Each stakeholder had a role in the planning process. The DHD took the lead role on facilitating stakeholder meetings, community engagement with PLWH and drafting the protocol. MDHHS took the lead with legal concerns and logistics of data sharing between parties. MedCart adjusted their electronic medical record so patient data could be easily extracted weekly. Most importantly, PLWH provided valuable information on how the outreach to PLWH could be improved. All working parties agreed that Link-Up Rx was ready to start in June and the program kicked off in July 2018.

The DHD HIV Program prioritizes meaningful involvement of our consumers (PLWH) in designing and implementing programs. We also prioritize the need to hire people that mirror the community we serve. We believe these are two reasons why Link-Up Rx has been successful to this point. During the community engagement process, PLWH gave overwhelmingly positive feedback. They also requested that the Link-Up Rx team report back to their groups after the program had started to keep them updated on progress and plans for expansion to other pharmacies. As requested, the DHD plans to follow-up with these groups in the spring of 2019.

MDHHS funds the DHD to run Link-Up Detroit, which is Detroit's Data to Care (D2C) Program. D2C is a CDC-endorsed program model that works to engage PLWH who are not receiving HIV medical care and work with each individual to get them established with an HIV provider. Link-Up Rx was viewed as an extension of Link-Up Detroit. The DHD received about $290,000 from MDHHS Ryan White Part B Rebate Dollars from October 2016 – September 2018 to pay for two full-time employees, partial-time of six employees, and all other program needs of Link-Up Detroit. MDHHS increased funding in October 2018 to $350,000 so the Link-Up team could add another full-time staff.

Objectives: The primary objective of Link-Up Rx is to improve viral suppression amongst PLWH in Detroit by decreasing the length of time and instances of interruption in taking HIV medication. The secondary objective it to improve the partnership and coordination between the DHD, MDHHS and pharmacists.

Evaluation and data management have been central topics since the initial discussions for Link-Up Rx started in May 2017. Evaluation metrics were discussed at length with all partners. Primarily, outcome evaluation is used, but a full process evaluation will be done 12 months into the program to determine if any steps in the current data flow can be improved to minimize staff time and increase timeliness of data exchange. Short-term outcomes are monitored at the end of each month (minimum) and long-term outcomes will be evaluated at six and 12 months.

Short-term outcomes include:

  • Number of individuals pharmacy shares with MDHHS/DHD
  • Number of individuals successfully contacted by DHD
  • Number of individuals successfully contacted by DHD that receive ART from referring pharmacy within 30 days of original fill date
  • Number of individuals who are referred for other Ryan White-funded core or support services

Long-term outcomes include:

  • Percent of successfully contacted individuals virally suppressed at six months
  • Percent of successfully contacted individuals virally suppressed at one year

To date, Link-Up Rx has not looked at viral suppression before and after Link-Up Rx's intervention. However, from speaking with clients in Link-Up Rx and by working with the pharmacy on a daily basis, we know that we have been able to successfully locate (62%) and (re)engage a significant amount (54%) of people after the pharmacy has not been able to locate them. In theory, every time a person has less time off their HIV medication, that is less time their virus could be replicating, which results in improved health outcomes for them and limits the risk of HIV transmission in our community.

We have met and continue to build on our secondary objective to improve the partnership and coordination between the DHD, MDHHS and pharmacists. The DHD and MedCart Pharmacy are in contact on a weekly basis to discuss client cases. This communication has helped improve other systems in our HIV programs, including, but not limited to health insurance navigation, expedited medical appointments for individuals who need updated prescriptions, medication management (including discussions about adherence and side effects). In addition, the partnership that was created with MedCart for Link-Up Rx has already benefited other programs at MDHHS, including, but not limited; pre-exposure prophylaxis (PrEP) monitoring for HIV-negative individuals who are at high-risk for HIV infection and improving the quality of MDHHS Surveillance data for HIV. Each week that MedCart transfers data to MDHHS, MDHHS gets to ensure that they have the most updated information for each individual that they send. This data includes correct locating information (phone number, address), date of birth, gender and history of HIV medication treatment. All this information can help MDHHS have a more accurate image of what the HIV demographics are in Detroit so they are able to make informed programmatic and funding decisions. In addition, the DHD is an active member on MedCart's Quality Committee that meets quarterly to improve MedCart's pharmacy services.

Data: Link-Up Rx is dependent on data transfers from MedCart Pharmacy to MDHHS then MDHHS to the DHD on a weekly basis. Data is transferred in a password-protected Excel file through a MDHHS-sponsored secure file transfer system between each party. MedCart Specialty Pharmacy gets the primary data on individuals who do not fill their medications from their electronic medical records system, called CPR+. Each week, MedCart downloads data from CPR+ and sends it to MDHHS. MDHHS then uses SAS to pull additional data from the CDC-supported enhanced HIV/AIDS Reporting System (eHARS) and transfers the data to the DHD. All data systems have been setup in a time efficient manner, so it only takes individuals 10-15 minutes weekly to manage the data transfer.

Once the data arrives at the DHD, Link-Up Rx outreach and outcomes are captured in CAREWare (CW). CW is a free, HIPAA-compliant, electronic health and social support services information system for Ryan White HIV/AIDS Program grant recipients and their providers. CW was chosen to track Link-Up Rx data for several reasons. First, CW has been an effective way to track information for Link-Up Detroit. Secondly, CW is a secure data management system that allows for each contact attempt and referral to be easily tracked. It also records all services that an individual has received in the past from RW funded providers (medical and non-medical) and medication cost assistance from the Michigan AIDS Drug Assistance Programs (MIDAP). This allows for other RW providers to see what Link-Up Rx outreach has been done with their clients. It also helps the Link-Up Rx team locate individuals because they will be aware of what RW and MIDAP services an individual has accessed in the past. Lastly, it provides quick and easy access to de-identified data reports, so progress for Link-Up Rx can be easily tracked and evaluated on a weekly basis in a time-efficient manner. For example, it takes less than a minute to run data reports that determine Link-Up Rx outcomes for everyone investigated as well as outreach work (phone calls, text messages, voicemails, coordination with clinics, etc.) that went into (re)engaging them.

As of December 2018, Link-Up Rx has been running for over five months. As of December 1, 2018, 183 people have been initiated for outreach after they were three weeks past their prescription pick-up date. Out of these 183 people, 62% have been successfully contacted. Out of the 183 initiated, 166 (91%) cases have been completed. Of the 166 completed, 58 (35%) have been referred straight back to the pharmacy and 32 (19%) have been referred to external supports like case management or insurance navigation. In order to achieve these results, the Link-Up Rx team made 715 phone calls, left 332 voicemails, sent 117 text messages and coordinated care for 61 people with different Ryan White agencies, clinics, and MDHHS insurance programs (Medicaid and Drug Assistance).

Each month the Link-Up Rx team meets to discuss results and what could be done to improve processes and outcomes. One key barrier that has come from these discussion is that many clients fail to pick-up medications because of a lapse in health insurance coverage. This can happen when their yearly reappraisal is due for Medicaid, if their income changes, or every 6 months for their MDHHS premium assistance or drug assistance payments. As a result of Link-Up Rx, pharmacists, MDHHS, DHD, MIDAP and Ryan White providers are all collaborating more on how to simplify insurance programs and minimize frustrations for clients when they are unable to receive medications because of insurance issues.

In summary, 12 months into the program our key objective of improved VS will be analyzed. At five months in, we have had much success in re-engaging PLWH and have seen substantial improvement in coordination and collaboration with our pharmacy partners.

Lessons Learned: We have learned several lessons through Link-Up Rx. The first of which involves partnership and communication. As detailed in above sections, the groundwork that went into the planning of Link-Up Rx has been integral to the program's smooth start and early success.

As detailed in the previous section, there is a significant amount of communication and weekly data transfers that need to occur in a timely manner for Link-Up Rx to be effective. Thankfully, the DHD and MDHHS had a steadfast relationship in place from a history of collaboration and from running Link-Up Detroit since February 2017. MedCart Specialty Pharmacy has been a reliable partner and brought additional expertise and skills to the partnership table. From the beginning all partners have been thoroughly engaged and willing to communicate and work together because we all share a common goal of helping our clients achieve viral suppression and stay healthy.

We have learned in the past five months of implementation that the most common reasons why people fail to pick-up their medications are lapse in insurance coverage, getting a new phone number and busy schedules. Some individuals (~25% of those we successfully contact) have greater needs than a quick referral back to the pharmacy. We often refer these individuals to a Ryan White case management agency for help with things like housing, mental health, nutrition, etc.

By far the most common and time-consuming barrier is insurance issues. Changes in income, employment status, age or family size can result in changes in insurance. These changes are often not apparent until it is time for the pharmacy to bill the insurance company each month when their next refill is due. These situation are frustrating for clients who constantly feel they are updating insurance information and get confused between the various systems that might pay for their medications (Medicaid, Marketplace Insurance, and HIV Drug Assistance Programs). While each of these systems have improved in the past couple years, each one has different requirements and requires annual or bi-annual updates from the client. As a result of some of the issues that have surfaced from Link-Up Rx, the DHD, pharmacy partners, MDHHS, CBOs and insurance representatives are forming a work group to try to develop a system or solution that will minimize the lapses in insurance coverage that result in frustrated clients and gaps in HIV treatment. The work groups' first meeting is scheduled for early 2019.

Cost-Benefit Analysis: A formal cost-benefit analysis has not been done. However, we have been tracking staff time that goes into standard D2C (Link-Up Detroit) versus Link-Up Rx. In quick summary, Link-Up Rx clients take significantly less time to locate and (re)engage in services than standard D2C clients. We estimate each successful Link-Up Rx client takes about 20 minutes of staff time, while each successful D2C client takes about 10 hours of staff time. Successful Link-Up Rx clients include those that are contacted and referred back to the pharmacy, CBO for case management, or clinic for a new medication prescription. Successful D2C clients include those that we successfully contact and they accept referrals into HIV medical care. The differences in success and time necessary is almost certainly because Link-Up Rx clients tend to have lower needs than D2C clients. Link-Up Rx clients are more likely to be stably housed, employed and typically have a good understanding of HIV treatment because of they have an established record of HIV medical care. D2C clients have either been out of medical care for a while or never been in care. They are more likely to be unemployed, unstably housed, and often dealing with other co-morbidities because they tend to not have been seen by any type of doctor in the recent past. Mental health and substance abuse are also common barriers self-described by D2C clients. All these high-level competing needs make it very difficult and time-consuming to get each D2C individual successfully engaged and retained in medical care. Our hope is that Link-Up Rx will minimize the amount of individuals that D2C needs to locate, by (re)engaging clients when they are in the initial stages of becoming disengaged in medical care, right when they are on the brink of a treatment gap.

It is a goal to one day do a full cost-benefit analysis of both D2C and Link-Up Rx. However, staff time and financial resources are already scarce so there is no plan for a cost-benefit analysis in the near future.

Stakeholder Commitment to Sustainability: There is strong stakeholder commitment to sustaining Link-Up Rx. It has quickly become a normal part of the weekly tasks for all three parties currently involved. The next step of scaling the intervention is to expand the program to additional pharmacies. The DHD would need additional staff to add more pharmacies. In addition, each new pharmacy would need to be dedicated to Link-Up Rx, because they would need to adjust their internal medical record systems to pull weekly reports and receive approval from their legal departments. However, with the initial positive result from Link-Up Rx, the DHD and MDSHHS are confident they can expand the program throughout Michigan and hope to add additional pharmacies after a full evaluation is done in summer 2019.

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